"Don't spend time worrying about how you are going to die. Worry about how you are going to live today"

Tuesday, June 28, 2011

A good look in the mirror

Yesterday was emotionally exhausting for me.  For some reason I just feel so overwhelmed these days with the prospect of us moving out of state.  I am sick of going through treatments and surgeries.  My son has been crying a lot and having meltdowns (he's only 4 so there is nothing rational about it....).  My husband has been travelling all over for job interviews leaving. I am home alone during the day recovering from my last surgery and cannot drive or exercise at all (which is probably what is making me crazy).  My family and friends seem to have moved on beyond my diagnosis and treatment and are just busy and don't check in very often any more.  I just emotionally feel drained at this point.

Last night I was getting ready for bed and went into the bathroom to brush my teeth.  I looked at myself in the mirror and I just began to cry.  I did not know who that woman was in the mirror.  What happened to me???  I saw a thinner woman that looked older with horrible dark circles under her eyes.  I saw frumpy, old lady hair.....with gray roots and frizz.  I see eyebrows half missing and drawn in.  I see a scar on her arm from the dreaded chemo port...and I know there are huge incisions across each breast under the clothes I see. 

I don't know who this is and where the old me went.  It's like I just flashed forward to this point in my life and really don't know how I got here.  I am just so sad.  I look so warn, older and beat up.  I feel so ugly.  I feel much like Frankenstein these days with scars across each breast, scar from the lumpectomy on the side of my right breast and chemo port scar in my right arm.  All I could do was just sit on the bench at my vanity in the bathroom and sob.  I just want my life back.  I hate breast cancer.  I hate even more what it has done to me and taken from me.  I know I will never have my old life back again.  That breaks my heart.

I honestly don't know who this new person is.  She is fragile, dependent on others, scared shitless, lonely and completely overwhelmed by even the simplest of things or decisions.  I can't even relate to her.  I was always the woman that was self sufficient, confident, independent and the type to forge forward through anything and tackle it head on.  Now just the thought of my life at times makes me want to run and hide in bed under the covers.  I find myself crying a lot again which is something I haven't done in months.  Why now?  Maybe it's because I know that this is not just a phase....this is how I have to live my life. 

I don't know how to not look in the mirror and see "that woman".  I want her to go away...I want the other woman back in the mirror.  I know this is a process.  I guess for the last 7 months I have been focusing on treatments and surgeries and making difficult medical decisions.  I don't even know what to do about the emotional effects of all of this.  I feel like I can't share with others how I feel. Those that love me and care about me would be mortified to know the thoughts and fears that reside in my head.  I am afraid to even say most of those words out loud as it could actually make those feelings more real.  Maybe not saying them makes them a figment of my imagination and they will go away.  Well I do live in the real world most of the time, so I know that isn't going to happen.

I know I have to take some steps to tackle this emotional crap.  Like everything else it seems overwhelming and I just want to avoid dealing with it.  Down deep inside I know I can't do that.  I know I can't continue to look in the mirror and see "that woman" forever.  I am going to have to take some kind of step forward emotionally to make that fraction of the woman I use to be go away and find me again.  For now, maybe I should just avoid looking in the mirror......who knew it could be so traumatic.  Boy am I glad my husband wasn't home last night for that mess.......he has no idea how lucky he is.

Monday, June 27, 2011

Recovering and bored

The recovery from this surgery has been easier than from my bilateral mastectomy surgery.  I have been off the pain medication now for three days and am functioning just fine.  I am sore, but it is not unbearable.  It's hard to not do anything for myself because I don't feel that bad, but my plastic surgeon is super strict and tells me not to do things.....ugh!  I am so bored sitting around being inactive!  I don't know how to do this for three more weeks.

So my breasts were slightly covered with some gauze that was taped over the incisions.  When I removed the tape, my skin was damaged badly.  Now I have what looks like a sunburn where the tape was.  My skin there is red, puffed up and super itchy.  There are even some blisters....nice hu?  I am putting some triple antibiotic cream on there and hope I get some relief soon.  All of this just keeps gettin' better doesn't it?  Who knew I would now be allergic to the tape they use in surgery. 

For the next 3 1/2 weeks I am suppose to not lift anything over 5 pounds.  I am not allowed to drive for 3 weeks post surgery too.  No exercise other than leisure walking for a month.  So I guess I will sit here on the couch and watch more bad TV.  I may actually have to resort to watching The Waltons or Little House on the Prairie soon enough as I have seen everything else on TV in the past 4 months.  I had no idea they still played those shows on TV, but sure enough they do!  Brings me back to my childhood when I actually watched those shows.  I hope I don't get that desperate to have to watch that stuff......maybe I should get Netflix instead.  I can't imagine tuning in to see Nelly Olsen be mean to Laura and Mary on a daily basis.  It would be pathetic to think that could be the highlight of my day.

At this point my pain is minimal and manageable.  I hope to get out for a light walk later once it's not so sunny because of my hair.  I am still babying my hair as instructed in the cold cap protocol.  Sun and heat are a big "no no" for my hair at this point.  As far as a hair update, it is still there!  I was shedding super bad the past few weeks - almost worse than I did all through chemo.  For now though it seems to have leveled off and the shedding is less.  I am still shedding more than I did before starting chemo, but it is manageable.  Overall, Penguin Cold Caps worked well for me.  My hair is thinner but I still have a full head of hair and look normal, not like a cancer patient.  That is something to celebrate.

Friday, June 24, 2011

Surgery is over...I have new boobs

Yesterday I had my exchange surgery.  The plastic surgeon removed my temporary tissue expander implants and put in my permanent implants.  I am so glad to have some more of this reconstruction completed at this point.  Another milestone in my breast cancer journey has been checked off.

I was unbelievably calm yesterday.  I guess when you have gone through so many surgeries and chemo you just get use to it.  I just wanted it over with really so I just pushed through.  My cousin took me to surgery yesterday so my husband would not have to take another day off work.  He has been taking so much time off for job interviews (he's trying to find a new job) that it just didn't make sense for him to miss another day.  I am so grateful my cousin went with me.  She was so supportive and understanding..oh and made me laugh a bit too.

Surgery went well.  My plastic surgeon had to revise both sides a bit to even my breasts out.  One was much lower than the other and one was off to the outside so he had to shift it inward.  He came in before surgery and marked me up with a marker so he would know what he needed to do.  Surgery lasted about 3 hours.  I guess that was longer than I thought it would be. 

I was rather nauseated when I woke up and they had to give me lots of medicines to help with that.  Those drugs made me so tired I could not even wake up or stay awake when I did wake up.  I ended up being at the hospital sleeping all day.  I finally got home around 7pm.  All I wanted to do was sleep.  My little boy greeted me at the door with hugs and insisted on walking me up the stairs and helping me get in bed.  That made my day :)

I slept on and off all evening and night.  I have been taking the vicodine every 4-5 hours to control the pain.  I am more sore than I imagined I would be.  It was nothing like having the bilateral mastectomy though.  I am confident I will feel pretty good in the next few days. 

I am glad to have this part over with.  I can't really tell what my new breasts look like as they have quite a bit of gauze on them.  They are a little bit smaller than my tissue expanders were.  Gosh I hope they are big enough!  I wanted them to be bigger than my original breasts.  Either way, they won't sag at all so I guess that's an improvement.  Now I will just wait for my next surgery in three months to graft nipples and areolas on along with fat grafting to fill out the upper breast area.  I can't wait to be done with all of this! 

Tuesday, June 21, 2011

Surgery again....

When I started this big walk with breast cancer six months ago and had an idea of how the path in front of me looked, I just never thought this day would get here.  This week I have my next surgery to replace my tissue expander implants with permanent silicone implants.  I remember thinking this part seemed so far off and would never happen and now, here I am ready for surgery! 

I read so many stories about women with tissue expander and how awful they were which made me worry how I was going to deal with them.  I really didn't think it was THAT bad.....honestly.  I was diligent to do the physical therapy exercises and stretches twice each day and I worked with a physical therapist to help me gain my range of motion back.  I also got right back into exercise as soon as it was OK for me to do so and have remained very active even through chemo.  My tissue expanders really don't bother me and I attribute my exercise and stretching to that success.

The tissue expanders are not pretty....they are perfectly round and they tend to migrate more towards your arm pits than breasts do.  They are super hard once they get filled up and I always worry what someone feels when they come in close for a hug....yikes!  In my case, one tissue expander is higher than the other too so they are lopsided too.  That is a bit hard to hide in some shirts but I won't have to worry about that anymore as of Thursday! 

I have not been as nervous for this surgery yet, but I am sure I will start to get a bit more worked up by Thursday morning.  I just hope I can hold it together as my cousin has to take me since my husband can't go.  I just don't want to fall apart in front of her...maybe that will make things easier as I seem to have no trouble falling apart in front of my husband! 

I am trying to mentally prepare for another full month of recovery.  No driving for a few weeks at all and worse of all, no exercise!  I am going to go crazy not being able to go to the gym.  I have to get into some type of relaxation or something to keep my stress levels under control with all that is going on right now.  Exercise is usually my stress reliever so this should be interesting.  We have some nature trails behind our subdivision so I plan on taking some leisure walks back there to just have some relaxation and peace.  I hope that does the trick but if not, there is always xanax (said sarcastically!). 

I know I still have a long breast cancer road in front of me even after I finish this surgery.  My reconstruction won't be completed until the end of the year at the earliest, but now with our pending move out of state I am sure it will be delayed as I may be too far to come back and complete my remaining surgeries here.  I can't even imagine trying to find a new plastic surgeon at this point but I guess I will cross that bridge when I get to it. 

It does feel good to finally get another step out of the way.  I hope and pray surgery goes well and my recovery is easy....crossing my fingers.

Wednesday, June 15, 2011

Enough already!!!!

My hair continues to shed...blech!   I am so sick of the crazy shedding that is going on right now.  Somehow I thought by now (6 weeks after completing chemo) things would feel more normal in the hair department.  But, I was wrong.....

I had horrible "hair envy" at the gym today.  I saw a woman with beautiful, silky, thick, long dark brown hair and I just wanted to push her off the elliptical!!! (just for a split second....I didn't actually act on my horrible thought).  For the past 6 months I have been obsessed with boobs and hair....something needs to stop the madness of this, really. 

After I had that moment of hair envy and severe hair jealousy, I walked away and thought to myself....."I bet there are lots of women that just completed chemo that have hair envy of me right now".   I felt better.  No, my hair is not pretty right now or thick and luscious, but it is is THERE and it is MY hair.  I am going to be grateful for that as I pick off every strand that continues to fall today......(as the shedding continues).  I keep going to sleep every night and telling myself "tomorrow the shedding will start to lighten up".   I am trying to remain optimistic but I have been saying that for over a week now.........getting kind of sick of saying it and it not happening.  Enough already with the shedding....ENOUGH!!!

Sunday, June 12, 2011

Hair, hair, hair...it's still all about the hair!

This past week my hair has been shedding so bad!  I knew with Penguin Cold Caps I would have shedding and lose some hair but I was not emotionally prepared for it to continue like this even over five weeks after finishing chemo.  This past week I have had worse shedding than the entire time during chemo!   Enough already!!!

I know that as I see every single hair fall I panic.  I know that it's crazy when you feel a bunch of hairs that have fallen out just dangling from the bottom of you hair and you grab them and it's a handful it's stressful.  I was not prepared to actually count that handful of hair and realize there were 65 of them!  I have never stopped to count the hairs that fell or save them in a bag to compare how much I lost each week...I simply just scoop them up and throw them away or simply use the Cone vacuum and suck them up.  This time because so many came out I felt compelled to count them...yep, there were 65.  I had not even combed my hair so lord knows how many more would come out after that!

It was so alarming this week that I did not comb my hair for 3 days....who does that?  I wore a hat and clipped my hair back loosely for 3 days.  Yesterday it was time to wash it and I was petrified!  I had a dream the night before that all of my hair starting falling out in clumps.  I was tempted to take xanax before washing my hair to help me cope.   Who does that? 

So I sucked it up after procrastinating and cleaning the kitchen and finally got the nerve up to wash my hair.  I did not take the xanax.....I talked myself out of that.  No one should require xanax to wash there hair (I keep picturing reading the bottle and having it say "take one pill 30 minutes prior to washing hair"....). 

When I combed it before washing, a lot came out as expected.  When I washed, I lost some but not as bad as I imagined given how much it was falling out all week.  I let it air dry mostly and when I looked in the mirror after, I still had what looks like a full head of hair.  It's not styled so pretty, but it is in fact a full head of hair regardless of every single hair that continues to fall out daily.

The rest of the day I continued to pick hairs off my shirt...yes, it shed like crazy all day again.  Hopefully it will stop or at least slow soon.  On a positive note, my hair has grown about two inches since starting chemo (my roots are the proof) and I actually had to tweeze some stray eyebrow hairs this week (I have not done that since starting chemo in March!!!!).  So I guess hair is starting to grow again a little.  That's great news since I am sick of playing connect the dots with my eyebrows.....

Wednesday, June 8, 2011

Six months later

Today makes it six months since the day they suspected cancer.  I can still remember the doctor's exact words "this no longer looks consistent with something benign".  She said that three times....I remember saying "I hear what your saying..you think I have cancer".  

That day change everything forever.  Nothing was ever the same nor will it ever be.  That is really hard to digest even six months later.  It never really gets easier emotionally.

When I think about the last six months, so much has happened.  I don't recognize my life anymore - or my body for that matter.  I still wake up and can't believe I have cancer.  I guess you never get use to that no matter how much time goes by or what you go through. 

Sometimes I feel so robbed from breast cancer.  It took away my care free life.  It took away my inner peace and much of my faith in things.  It changed the way I think about things.  It stole me sense of relaxation and calmness at night before bed (now it is panic so I take xanax rather than be left alone with my thoughts at night in the dark and silence).  I can't even continue writing the list of all the things breast cancer robbed me of....the list is endless.  This is truly a horrible disease and no one should have to endure it's wrath.  It's wrong.  God I hope they find a cure soon.  Maybe it could restore some things that seem missing in my life right now........

Tuesday, June 7, 2011

What I want

Today for some reason was a bad day for me.  I am so emotional.  I went back to work last week and started tamoxifen this past weekend.  In addition to all of my cancer BS in the last 6 months, my husband is interviewing for new jobs all over the nation and we will most likely be moving away once he accepts a new job.  Right now I feel completely overwhelmed.........I don't feel like myself.  I don't know who this person is and whose life this is anymore.

I feel completely overwhelmed by going back to work.  For the past several months I have been in my own little breast cancer world.   I have been off from my stressful job.  I have been solely focused on my health and my family and nothing else.  I was focusing on treatment and surgeries.  Now I feel like I have been thrown back into my old life and I am not the same person.  I can't identify with my old life because NOTHING is the same anymore and it can't ever be the same as it was. 

I find it so hard to focus on work.  It just seems so pointless, meaningless and insignificant after all I have gone through. I plan on quitting my job once we move anyway so I just don't really care anymore.  It's so hard to just act like I care when I hate my job and already know I am one foot out.  I just don't care.   I don't want to do it.  I just want it to go away.  This is hard for me because I have always been a very hard worker and very dedicated to my job giving over 100%.  I don't know who this new person is.

Today it just got to me.  I feel so overwhelmed.....I just wanted to run into my room, climb in bed and put the sheets over my head and hide.  My husband called me today to check in and I just started bawling.  I have not cried like that in a long time.  My husband listened as I told him "everything is out of control..I can't relate to this life right now.  I hate my job...I don't want to do it and I just want it to go away!".  He said "don't worry...it will all be OK"!

After we got off the phone I thought to myself, will it really be OK?  What I want is for someone to tell me that "it will be OK" and for me to REALLY believe them.  I don't know anymore.  I just want to BELIEVE it will really be OK.  I don't know what to believe anymore.  I feel like my life has been in an upheaval for six months.  I don't know what my life is suppose to be like anymore.  Knowing we will most likely be moving soon away from family and friends and starting a new life, I really can't even picture what my life will be.   I just feel so emotionally drained and exhausted at this point.  I have my exchange surgery for my permanent implants in two weeks and then I am off work for another few weeks for recovery.  I am just drained..........I don't know how to move forward and "just live" without being overwhelmed by breast cancer for the rest of my life. 

Sunday, June 5, 2011

Hair is falling

I finished chemo almost 5 weeks ago which I still can't believe.  I just kind of thought that after chemo my hair would stop shedding so much.  I did do cold caps to save my hair and they worked - I do have a full head of hair still (which is great!), but I am still shedding.  I feel like now that chemo is over the shedding has been greater.  Maybe it is just a phase...let's hope so! 

I have long hair down to the middle of my back and during the past several days I keep feeling hair tickling my arms...it is more hair just trying to fall out that is hanging down from my hair.  I am so sick of finding these and removing them all day long!  Ugh!  When will the shedding stop???  I hope soon.

I am so glad I did the cold caps to keep my hair.  It has made a huge difference to me and was worth the effort.  I still look like me with long, brown hair.  I guess the only difference is the very long roots (oh how I would love to get my hair colored!!!) and a bit thinner.  The good news is that I am the only one that notices the hair being thinner.  My best friend visited this weekend and she stared at my hair all Friday night and said "it's amazing that you were able to keep your hair and I have been studying it all night and I can't tell that you lost any".  That made my week....she is very honest and would tell me the truth. 

At this point, I will wait to color my hair even with the gentle no peroxide and no ammonia hair color kit.  I just want it to hang on more and have the shedding much less before I do anything that could be damaging to my hair.  I have never had roots so bad in my life......it's not pretty hair, but it's my hair.