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

Sunday, January 30, 2011

Feeling more like myself today

Surgery was 3 days ago and things are going well.  I slept well at home last night.  I only woke once in the middle of the night to use the bathroom, have a cracker and take some more pain medication.  I have been trying to take the pain medication every four hours so I can keep the pain away.  That has worked very well so far. 

This morning I got up around 7am and just relaxed in bed for a while.  My son came in and brightened my morning with his giggle and smile.  We hung around in bed a while and had some cheerios for breakfast.  I have been drinking a lot of water too.  After breakfast I wanted to get cleaned up a bit.  I decided it was time for a bath.  I cut a hole in a garbage bag and slipped it over my head.  I tied up my drains with some shoe laces.  I placed a small towel around my neck and secured it with a hair clip to prevent any water from getting down under the garbage bag.  I sat in a nice, hot bath and that felt great.  I soaked, washed my lower body and even shaved my legs.  My friend washed my hair and rinsed it using a large cup.  It felt so good to feel clean again!

I got dried off, she stripped my drains and changed my dressings.  I put on some comfy sweat pants and stepped into a tank top with a shelf bra in it.  I slipped an open sweat jacket on that had pockets which are perfect for my drains.  I even blow dried my hair and put a little make up on.  I feel a little like myself today.

I finally did look down at my chest.  I was not sure I wanted to see, but I know I had to look at some point.  I looked and it really wasn't that bad.  I have lost so much weight since getting diagnosed (13 lbs) that my breasts had gotten smaller anyway.  Right now in a tank, it is barely noticeable that they are smaller.  They did fill me with 125cc's and on someone small like me, it looks like an A cup.  I don't feel self conscious at this size in a tank because I was never that big to begin with.  That makes me feel pretty good.

The oncologist called today and discussed my treatment.  It looks like she and some of the other medical oncologists think that chemo would be a good part of my treatment especially since I am younger and want to treat aggressively.  They feel because I am healthy that the risks are few.  I briefly discussed preserving my hair and she says that is an option and will get me some data to review. 

Right now, I feel good.  My family and friends have filled my home with cookies, flowers, gifts, reading materials, cards, blankets, pillows and homemade meals.  I feel comforted so much by all of the kindness and generosity of those that love me.  I know I am in good hands and will be OK.

The main source of discomfort right now is poop, or lack there of!  My goodness...I have taken laxatives and stool softeners and still can't go.  I have not gone to the bathroom since Thursday morning.  I don't know how I can eat any more food until I go!  Lord I know the colon is like 22 feet long, but it doesn't mean I need to fill all 22 feet with stool!

Saturday, January 29, 2011

Surgery is all over

Thursday was my surgery.  I am glad it is all over.  It seemed like a long morning for me.  Surgery wasn't scheduled until 1pm so I had to wait all morning.  I got up with my little one and he climbed in bed with me.  We put on his favorite show, Calliou and cuddled watching it together in the darkness.  I got him dressed and fed him breakfast just like every other morning.  My husband I and dropped him off at school and it was so hard.  I just hugged him tightly and tears rolled down my cheeks as I said goodbye.  I felt so sad leaving him knowing I was going for surgery.  He was so happy to see his friends and think about his sleepover for later that night that he didn't even notice I was crying.  I watched him walk into the classroom and slowly turned and walked to the car. 

My husband and I started the hour plus ride to the hospital.  I put on some relaxing, Zen, harmony music on my ipod the whole way there.  It did wonders to keep me calm and tear free.  I can't believe what a difference the music made in my mood.  Once we got to the hospital, I kept the music playing until my surgery. We were there for over 2 hours before surgery was to begin so the waiting was hard. 

Before I knew it, I was prepped and ready for surgery.  Saying good bye to my husband was hard.  We both cried.  Then I walked to the OR with the staff.  It was hard to see my husband wipe tears from his face.  I have only seen him cry 3 times before (when my dog died, when my son was born and when I told him I had cancer).  I know he felt so helpless and there was he could do. 

I remember getting into the OR and climbing up on the table.  Everyone was ready for me.  It was time. 

The next thing I remember was waking up and people talking to me.  It was about five hours later and I was out of it.  I remember my husband and friend coming in and talking to me.  I was so tired.  I don't really remember pain, I just felt out of it.  I just wanted to sleep.  I do remember having a Popsicle somewhere in there, but nothing else. 

The rest of the evening was a bit rough as I was so nauseated.  I could not keep much food down and I started throwing up.  They kept giving me more medication for nausea and a pain pump to control the pain.  It was a long night with little sleep, but once I was no longer nauseous, I felt so much better.  I was able to have food and get up to go to the bathroom finally.  The pain was there, but not as bad as I thought. 

I got home a few hours ago and am resting comfortably in my bed with my best girlfriend here to take care of me for a few days.  I was welcomed by gorgeous flowers from my husband, a cookie bouquet, gift baskets and more. It was like Christmas when I got home.  The only thing missing is my son.  He is still at his sleepover having a good time which allows me some time to rest and catch my breath. 

I got through surgery OK.  I am glad it is over with.  What a relief.  I hope the pathology doesn't reveal anything else bad.  I will pray for that as I get some rest. 

Wednesday, January 26, 2011

I just made new curtains, what is wrong with me???

So my surgery is tomorrow and I have tried to say busy all day.  So I got home this afternoon and decided to sew new curtains for my bedroom.  Here I sit in my freshly painted bedroom with my beautiful, new curtains I just finished!  When I told my sister in law I was going to sew curtains today she said "you are something, really".   I responded with "I am a bit crazy, maybe neurotic".  We laughed.  What is wrong with me?  I am having major surgery tomorrow and I am sewing curtains....I guess I just thought I would find comfort having a newly decorated room for my recovery.  Now I plan to do some online retail therapy to order new sheets, slip cover for my chair/ottoman and some wall sconces with candles.  I am an artist so I will be designing some fabulous art for the walls during my recovery (I do graphic art prints).  I guess stress and anxiety manifests itself in so many ways.  At least I have a nice new paint job in my bedroom and beautiful new custom curtains to enjoy in the coming weeks while I get better!  Call me crazy.........

Tomorrow is surgery

I woke up this morning and just laid there in bed in the darkness, listening to my son sleep on the baby monitor.  I just laid there and then began my new morning ritual.....a rosary.  I laid in the darkness praying and praying for a long time.  This is how my mornings start ever since getting cancer. 

I remember the days of just jumping out of bed and crawling into my bed with my son to hug him and wake him slowly.  Now I have to spend a long time praying first.  I use to be woken up by the alarm and snooze several times.  Now I wake up way before the alarm and can't go back to sleep as soon as I remember that I have cancer.  Everything is different. 

This morning after I prayed, I climbed into bed with my son.  I realized this will be the last time I will be able to crawl into his bed and really hug him for a while.  That made me sad.  I love starting my day being close to him and telling him how much I missed him while I was sleeping.  I love laying next to him and gently waking him with hugs and kisses and kind words.  It's probably one of the best parts of my day...just hugging him tight.  I will miss that in the coming weeks more than anything. 

After my son went to school, I sat here alone trying to plan my day - my last day before surgery.  I feel a sense of peace that I can't explain, but the panic still lurks in the background.  I hugged my husband really long and tight before he left for work.  He kept telling me he loved me. 

I am trying to get ready to go to the gym for my last workout in a long time.  I just want to enjoy being able to move my body freely and feel normal for one last day.  After that, I plan to stop by church for more prayer and light a candle.  A few errands and home to pack things for my son's sleepover at my brother's and get my things together for the hospital.  Tonight my husband is taking me and my little one out to my favorite middle eastern restaurant - I guess it's his last ditch effort to get me to eat a decent meal (I don't eat much these days and have lost 13 lbs since getting diagnosed).  I hope when we get home we can all climb up into my son's bed and play a game and read some books together as a family together.  I just want to see my son smile.  I just want to feel his innocence, happiness and love.

I would like to say that I am ready for surgery, but I don't think anyone can ever be ready for something like this.  The surgery makes my breast cancer real.  It changes everything.  My body will never look the same or feel the same.  I feel like I am losing a part of myself not only physically but emotionally in this.  I hope I can find new parts of myself that I never knew existed after the surgery.  I hope these new parts of me have strong faith, optimism, happiness and courage.  I don't know how this will go and for that I am scared.  Everyone keeps telling me that once I start this journey, I will just keep moving forward through it and get it done.  I know that is true, but it will still be hard, scary and lonely.  I hate breast cancer.  I hate that I am using the word "hate", but nothing else expresses it so right.  I guess for now I will try to enjoy my last day with life as I know it now and live the rest of my days moving forward with a new cancer free life. 

Tuesday, January 25, 2011

Getting ready for surgery and last glimps of the old me

Surgery is two days away.  I don't know what to feel anymore.  I don't want that day to come, but I just want it over with.  I am still scared but feel a little more peace inside somehow.  I am not sure why really.  I guess I have gotten to some type of acceptance with what will be. 

Today I am just trying to get things done before surgery.  I remember before my son was born, I was nesting and doing all kinds of things around the house last minute.  I find myself doing the same things now too.  I went to the book store today and picked up a few books on breast cancer that were referred to me (The Anti-Cancer Lifestyle and Foods That Fight Cancer).  I also picked up a copy of a book that has all the details of breast cancer as a reference.  I came home and made my favorite veggie mini crustless quiches - all organic for breakfasts and popped them in the freezer for the coming weeks.  I am making chicken and roasted veggie soup tonight to pop in the freezer.  I love soup especially since it's so cold here. 

I started to get my body ready too.  I colored my hair, painted my toenails (like anyone is going to see them anyway) and plan to paint my fingernails tonight after my son is in bed.  I am getting everything organized in my bedroom and brought up an extra card table for post surgery supplies (peroxide, q-tips, gauze, post OP instructions and books).  I even borrowed a wedge pillow from my sister so I can rest and sleep comfortably in my bed.

Last weekend my husband and I painted the bedroom a nice Tuscan gold color.  It's soothing but a little bold.  It brings life into our bedroom.  Tomorrow I am sewing curtains...yes, sewing curtain panels.  My husband already installed the new blinds and the curtain rod so all is ready for my curtain panels. 

I feel so odd looking at my body.  I look at my breasts and I don't know what to feel.  Soon, they will be gone.  I don't know whether to be sad or not.  They are part of me, but I never "loved" my breasts.  They are smaller....a small B or what I call an A+.  I have always wanted them to be a little bigger, but then again I am a smaller person so I guess they are proportional.  I have always accepted them and it made it easier to workout without bouncing all over the place.  I hate to lose part of my body, a part of me, but that's what has to happen now.  I just feel strange that I will never see my original body anymore.  I feel a sense of loss and wonder if I will have regret.  I also wonder if I will remember what my body looked like before.  I finally decided to take photos today.  I took photos of my breasts.  It was odd.....I have never done anything like this before!  I just felt like a part of me wants to remember what I looked like before this all happened.  I don't know if I will ever look at those photos again or not, but at least I have them.  I don't know if it gives me any more peace or not, it just felt like something I had to do. 

As I look in the mirror, I hold my breasts and cradle them a bit.  I just can't believe that my small, insignificant breasts betrayed me this way.  They are just breasts when I look at them but I feel like they are full of poison and toxic.  I never thought in a million years I would be faced with this.  I continue to walk one step at a time forward on this scary breast cancer path and still can't believe this is my life. 

Monday, January 24, 2011

Counting down the days

Surgery is really happening this week.  I just can't get my head around that.  I only have a few more days with my body the way it is; the way it has always been.  I just can't imagine looking down and seeing a disfigured body and what that will do to me.  Will I ever feel like myself again?  Will I ever feel whole again?  Will I ever look down and not think of cancer every day when I get dressed?  I just can't get my head around this and what it will feel like.  I am scared, but then again every bit of this journey scares me.

I just don't remember what it feels like to just wake up in the morning and just start a "normal" day.  That ended for me back in December and it just seems so long ago.  I don't really remember what if feels like to not be consumed with fear, panic, sadness and cancer.  I long to have my pre-cancer life back.  I know down deep that's not possible though.  It's hard to take.  This is it....this is really it.  I just shake my head and ask "How did I get here?  How did this happen?  Why me?"  I will never know the answer to these questions.

For now I sit and wait.  I try to act normal and get ready for my surgery.  I am running errands and getting supplies for my recovery.  Today I bought a stack of magazines to occupy my time.  I accept calls from family and friends and try to have a conversation about things but it ends up being about my cancer and surgery.  I honestly don't know what is going on in the lives of most of the people I care about anymore.  That's sad.  These phone calls usually end up with "I love you's" and tears for both of us.  It's so hard; so damn hard. 

Down deep inside, I just want to live.  I want my life.  I want things to be normal - getting up and going to work and spending time with my family.  I just want to go out to dinner with friends and laugh.  I want to play in the snow with my son and not fear that I won't get to do that again.  I want to be out with my husband and just be a happy couple, not a couple dealing with cancer.  I just want to feel like me again.  I don't know who this person is in the cancer life.  It can't be me. 

I don't know how I will say good bye to my son on Thursday before I go to the hospital.  I don't know how I won't cry and be sad.   I don't know how many times I will tell him that I love him.  I don't know how I will ever let go of that last hug before I leave.  I keep picturing them wheeling me away from my husband to the OR while I am holding his hand and crying and then finally having to let go of his hand and go alone.  I am so damn scared.  Everyone keeps telling me "you will get through this....you just will".  I don't know how to do that.  I know that I am in hell right now and the flames are all around me and I have to keep walking forward one step at a time.  The flames are big, very real and very close and I have to keep going.  I am just scared.

Sunday, January 23, 2011

Saving my hair

I am trying to get my head around the strong possibility that chemo may be in my future.  It's strange, but I never considered myself really vain, but for some reason my hair really matters to me.  Maybe because it's really long and makes me feel young and attractive.  I don't really know.  I often wish for thicker, prettier hair, but now I just love the hair I have and don't want to lose it!

When I think about losing my hair, I feel like it takes my private battle with breast cancer to a public battle.  I had a hard time telling family and friends about my diagnosis to begin with and have asked them not to tell others unless I agree to it.  I am not ready to go public...heck, why do you think my blog is anonymous???  I just feel like once you tell people you have cancer or they know you have cancer, it changes everything.  The only time I feel "normal" now is when I go out shopping or to workout.  No one there knows I am sick.  No one looks at me with pity or sadness.  No one treats me different because they don't know.  Once I lose my hair it seems like that small sense of normalcy I feel is going to be gone. I realize it is not the end of the world, but it will be hard none the less.

I have been reading a lot about the Penguin Cold Caps to preserve your hair during chemo.  I am just excited about what I have read and am optimistic this can be an option for me.  It makes me a bit more relaxed about the thought of chemo which is odd considering that there are still risks with chemo that I can face.  Maybe I am more vain than I thought???  I don't know really, but for some reason it gives me a little more peace.  My medical oncologist did mention it as an option in my consult but I didn't take it too seriously.  Now, I am going to really look into it.  I know like with all things there is a risk.  With the cold caps it looks like the only risk talked about is the possibility of mets to the scalp.  I guess what I need to know is how common are scalp mets to begin with and then really review the literature and studies to quantify what that means.  Obviously I don't want to risk anything here, but I guess it is worth looking into at least. 

I guess if that isn't a good option for me, I will do what all other cancer patients do, buy a good wig.  It's not ideal, but I will get through it just like all the other people.  I just wish I could keep a little bit of feeling normal in this...whatever normal is anymore.

Saturday, January 22, 2011

Telling my little boy

I remember as soon as they told me I had breast cancer, one of the first things I said to my husband was "how are we going to tell our son?" as I sobbed.  I have thought about that everyday since getting diagnosed and I finally had to tell him today.  With my surgery coming up this week, we have to tell him something.  I think he knows that something is going on even though he is only four.  Kids are so much smarter and perceptive than we ever give them credit for. 

For the past week he has been crying a lot in his sleep and had a horrible day at school this week with lots of crying.  When his teacher told me about his day (which is completely unlike my son - he never cries) I knew I had to talk to his teacher.  I met with her and explained what was going on and told her we were going to tell him this weekend.  I left his school in tears feeling so sad that my illness could scare him or make him sad.  It just breaks my heart to think that because of me and my stupid breast cancer that my son will have to experience these things.  All I want to do is protect him and there is nothing I can do.  It makes me feel so helpless. 

I tried to set the stage for happy thoughts with my son earlier this week.  He has been asking to spend time at his cousin's house and wanted to go there for a sleepover.  He has never had a sleepover without us so I really didn't know if that would freak him out or not if we were not there.  So I explained that if he had a sleepover at Uncle John's house that Mommy and Daddy would be here at home and he would be there without us.  Then I told him he could talk to us on the phone though if he wanted and would that be OK.  He said it was fine.  So I told him we would arrange a sleepover soon.  All he talked about this week since then was wanting the sleepover.  So last night when he asked me again, I said "you want me to text Uncle John right now and see if we can do a sleepover next week?".  He said "YES"!  So I sent a text and of course got the response back saying the sleepover was on for Thursday and Friday.  My son was so excited he wanted to go there now.  I explained it would be next week.   He had no idea the sleepover would be during my surgery.

Today after lunch, my husband and I sat down with our son on the couch.  I pulled him up on my lap and put my arms around him tight and told him how much I loved him.  I then took a deep breath and started the talk.  I simply said "while you go to Uncle John's for your fun sleepover, Mommy has to go and get a boo boo fixed.  I am going to the hospital where they fix boo boos and the doctor is going to fix it."  He made a sad face and and said "I will be sad".  I asked "why will you be sad?".  He said with his quiet little voice "because it will probably hurt you".  I said "I will be fine and the doctor says we need to do this so I can stay healthy.  I will be home by the time you get home from your sleepover and will be resting.  When you get home I will have some special treats for you too!"  He immediately asked "what special treats?" with a smile.  I said "I can't tell you now or it won't be a surprise, silly!"  I also went on to tell him that "when you do come home,  I will be a little tired and sore for a few weeks so I would be able to run and play for a  little while.  I can read books with you, watch movies with you, play board games and maybe play a little Wii so we can still have lots of fun.  I am going to need you to help Daddy bring me snacks, something to drink and I want you to color me lots of pictures to look at."  I asked him if he had any questions and he said "can I bring my light sabers to my cousin's house?".  I laughed and said "sure, but I meant did you have any questions about my boo boo?".  He said "no" and then he wanted to watch a movie with me. 

I sat there in disbelief.  I was so worried he would ask a ton of questions or be scared. I know we didn't go into detail because I feel that sometimes we offer too much information and that is probably more scary for kids in the end.  I figured that if he wanted to know more, I would answer his questions honestly.  Right now we don't know if I will need chemo or anything else so I just focused on the surgery since that is the only thing that is certain.  I know this won't be our first talk about my boo boo, there will be other talks when the time is right.  For now, I feel a sense of relief.  I thought I would completely break down, but I knew I had to make him really see I am OK and will be OK in all of this.  I hope in the coming days he will voice his concerns or ask questions if he has them.  I want him to feel he can tell us anything and ask us anything, always. 

Friday, January 21, 2011

Second opinions mean hope and more questions

This morning I met with a second medical oncologist at another hospital for a second opinion on the whole chemo situation.  Though I don't know what to do yet, the meeting was good for me. 

I met with the medical oncologist for over an hour.  At first she reviewed my basic stats and oncotype score and said no chemo recommended.  Then I brought up my concerns and questions and as she went through them one by one, she started to question if no chemo would be the best choice.  We reviewed the Adjuvent! Online tool and that indicated that there may be an additional 5% risk reduction with chemotherapy for me. She said the main thing driving that number was my age and my tumor grade (2).  As we reviewed this and all of the other information, she seemed to think further research was needed because I was in a bit of a gray area regarding chemo. 

So she left it with me that she would review my complete file (it's getting sent to her from another hospital), look into new studies/literature, evaluate risk reduction from other options (ovarian oblation) and get back to me.  She scheduled me to return to her office in two weeks to review this after my case was reviewed at tumor board next week.  Although I don't have the answers yet to make a final decision on chemo, I feel like this doctor is working with me to get there.  I think getting a second opinion was the right thing for me.  I think it has brought me a little peace as I feel like I am doing something to help me make this important decision. 

I know that being an analytical person is making some of this torture for me as I want solid information to make my decisions on and sometimes that information is just not available.  I am having a hard time accepting that when it comes to making life-saving decisions.  I know no one will give me any guarantees here - I realized that the day I was diagnosed when they kept using the word "treatable" instead of curable.  There are no guarantees in life, especially when it comes to breast cancer.  I just need to come to a place where a decision seems clear to me and that decision becomes something I can live with knowing in my heart it was the right thing to do for me.  Right now, I am not equipped enough to make that decision with the questions I have and the little information that has been provided to me so far.  I pray to God asking for a sign or something that triggers the right decision for me.  I pray I find peace in that decision and I can feel good about it no matter what it is. 

Thursday, January 20, 2011

Breast Cancer Mentors

This week I had the chance to speak with two breast cancer survivors which was helpful.  It's amazing to me to speak to these two amazing women and hear their stories and how they dealt with their cancer journey.

The first survivor I spoke with was Kathy.  She introduced herself to me in the cancer center when I was there to meet the surgeon and she just urged me to call her and talk.  She wanted me to know there was hope and life after breast cancer.  I talked with her and then she invited me to lunch at her home earlier this week.  She seems so upbeat, happy and positive.....I keep thinking "will I ever get there"?  Right now this has been difficult for me and I am having a hard time being positive about all of this.  Through speaking with her, I did see hope.  She has handled this so well and is really enjoying life.  She had bilateral mastectomy with immediate reconstruction just as I plan to do.  She told me the surgery wasn't that bad and she felt way better than she thought she would.  She was open to any questions I had and was so honest about her feelings.  I really felt good after meeting with her.  I only wish that some of her optimism would rub off on me!

The other woman I spoke with is a former patient of my plastic surgeon.  I called her to ask some questions about the reconstruction process and results.  She was completely open and such a warm, caring woman.  She is only a few years older than me and has three kids.  She has been diagnosed with breast cancer three times in the past 7 years!  I was stunned to hear how happy, energetic and positive she sounded.  It seems like if anything would get you down, it would be having breast cancer three times.  She talked to me about reconstruction and the whole chemo process. She told me how she just went bald and was fine with it and didn't care what anyone else thought.  I listened in amazement at how her attitude was so incredible considering all she had been through.  I kind of felt guilty feeling bad about my own situation. 

I feel like after I talk to a survivor it has an amazing impact on me.  I see hope and happiness in them and think it's possible for me too.  Life goes on for them and they are living it.  Right now I just can't see all of that as I am at the base of a very large breast cancer mountain.  I guess I just have to climb that mountain step by step to join these wonderful ladies on the other side.  Right now it seems overwhelming and and like it will never happen, but it's because I am just starting my journey.  With each step I hope to gain faith, maintain hope and be a little closer to happiness and joy.  Being in the middle of this is probably the hardest part.  It consumes your mind, spirit and soul.  I guess it only does if you let it.  I know I need to push the breast cancer aside at times and just live even though I am in the middle of it.  Down deep I know that, but it's still hard. 

Wednesday, January 19, 2011

Wait 2 months for 2nd opinion....NOT!

I am agonizing of the "chemo or not to chemo" question and just thought a second opinion would help out in some way.  I decided to call the first cancer center I had seen (where I was diagnosed) and see if I could meet with a medical oncologist.  After passing me around on the phone for a long time, I was told I could not see a medical oncologist until mid-March.  Are you kidding me?  I told her "well I would need to be treated before then if I am having chemo".  Ugh....as if having cancer isn't bad enough, they want you to wait and have another two months of anxiety over chemo or no chemo.  Yes, I do realize that they would not start chemo until 5-6 weeks from now (4 weeks after my surgery and my surgery is next week), but it doesn't mean I want to ponder that dilemma and question it for the next two months while I recover from a major surgery that is also emotional.  Talk about torture!

I have been dealing with two cancer centers on my journey and I can say there is a distinct difference on how I am being treated at both of them.  The center I have chosen to go with is so thorough, compassionate and goes out of there way to give me time to ask questions it's incredible.  The other one is always a hassle.  It was like trying to create world peace or something when I called to get copies of my films.  You would have thought I was asking for them to do something impossible.  While I love the center I am having treatment at, I am just not sure what to do about chemo.  I really thought hearing another medical oncologists opinion may help solidify my decision in some way.  I guess now I must seek a second opinion from a well respected hospital that is not a national cancer institute in my area because it's the only option.  At least they can get me in for an appointment in two days.  I guess I have nothing to lose, right?

I would love to go to another national cancer institute for a second opinion, but it's just not possible to travel out of town at this point since my surgery is next week.  I do have the option of having a second opinion on the pathology by mail through John Hopkins.  I am not sure that will give me the answer I am looking for since I really want to discuss treatment. 

I have said it a ton of times on my blog....this is SO hard!  I know I am searching for answers to questions no one can answer - even the qualified medical oncologists.  It is such a frustrating component to this whole situation.  I keep praying to God each day that there will be some sign that will let me know what to do.  I keep praying for one bit of information that makes my decision just a little easier.  I guess that is a lot to ask for, hu? 

Tuesday, January 18, 2011

Now what do I do? More difficult decisions

So I did meet with the medical oncologist today to really discuss the Oncotype DX test results and chemotherapy.  My medical oncologist told me that based on my score of 17 that I was at an 11% risk of distant recurrence in the next 10 years based on my tumor.  Being that this it technically the "low risk" group, she did not recommend chemo because she did not believe the benefits outweigh the risks.  She indicated the additional risk reduction that potentially could be obtained was only an additional 1-3% and because I have a less aggressive tumor (Grade 2, HER2- and strongly ER/PR+) that chemo typically doesn't work as well on these types of tumors.  Chemo is looking for rapidly dividing cells to kill and my tumor is not that aggressive.  The other thing she showed me from the test results are that the confidence interval is 95% meaning that the range of my recurrence rate is 8-14% and they take the average (11%) and that is my recurrence rate.  They really don't know if I am 11% - that is just the average...so this is a 7 point difference from 8% to 14%.  At 14%, the potential 3% may sound appealing.  At 8% the risk reduction is a potential additional 1 1/2%. 

I had a few things to question her on.  First of all on my pathology report from the lumpectomy it indicated that I have "angiolymphatic invasion", meaning the cancer cells have a pathway to vessels and lymph nodes.  It doesn't necessarily mean the cells have moved, but they could have (that sounds bad hu?).  So I asked if this puts me at a higher risk and she said it does a little bit but there are other higher risk things that would be more concerning like HER2+, ER/PR negative, Grade 3, etc...  Still, it make me feel like I have cancer cells swimming all over my body right now and I am freaking out!  So if this is my one chance to try to blast these swimming cancer cells, why wouldn't I want to do it?  She said she would give me chemo if I wanted it (Cytoxen and Taxotere for 4 cycles over 3 months) for peace of mind, but there are risks of having chemo and you may not see any result in the end anyway.  UGH! 

My thought is, how do I live with my decision on this either way?  If I have no chemo, will I constantly worry that I didn't do the right thing?  If I don't do chemo and it does come back, can I live with that?  If I do chemo, it can still come back - there are no guarantees either way.  I feel like I am making decisions based on rolling the dice or something else by chance.  Nothing seems clear.  Nothing seems compelling to help me know what is the right thing to do.  In the end, I want to be here to raise my young son and I want to do whatever I can to have the best odds of that happening.  I also have to live with the decision for the rest of my life.  Will I be OK with it either way or always have regret?  I just don't know how to work through this right now.

I guess I will seek a second opinion and see if another medical oncologist tells me something different or something compelling that makes the decision easier.  My medical oncologist also referred me to a oncology psychiatrist that can help me sort through the decision (not medically) by helping me address my own issues and feelings on all of this.  I must really be a "basket case" if I need a psych to help me and my doctor recommended it!  I actually think it is a good idea as I am just freaked out on this one. 

I am so emotionally drained and physically tired.  I am SO SICK of breast cancer and all the crap it dishes out.  I want my life back.  I am sick of asking questions that no one can answer.  I am sick of searching for something NO ONE can provide (guarantees).  I am sick of trying to make life saving decisions based on vague information.  I am sick of being obsessed and consumed by breast cancer.  I am sick of going to the doctor and having people check out my boobs.  I am so sick of crying and being scared.  I am sick of looking at my son and wondering if I will be here for him. 

I keep looking for meaning in all of this and I just can't see it yet.  I am so tired, so very tired.  I just want to sleep peacefully and wake up in the morning not thinking about this.  I need a vacation from cancer, but I know that's just not possible.  It is part of me now.  It will always be a part of me and my life.  I just have to find a way to make it a smaller part of me - somehow. 

Monday, January 17, 2011

Facing my reality head on

I have seen a few photos online of what various reconstruction surgeries look like, but I haven't really looked at them.  I figured it was time to face this as soon enough it will be my reality and I need to prepare myself.  I don't know that you can ever really be prepared for something like this, but I need to try anyway.

I am fortunate to have found a wonderful online community of breast cancer patients and survivors who share their experiences, thoughts, fears and even photos of their journey through breast cancer.  In that online support group so many courageous, gracious women have shared their most intimate photos.  I finally got the nerve to go and look.  I sat there on the couch with my laptop nervous to even look.  I opened the website and began to feel my heart beat deep in my chest as I opened the first post with photos.  I sat there going through post after post looking at photos as tears streamed down my cheeks.  I still can't believe this is going to really happen to me. 

Many of the photos were right in the middle of the process or right after the process was completed.  I keep trying to imagine looking down and seeing the same thing on my chest and not freaking out.  I wish there were photos of a year or two down the road so I could see the final result after the healing is complete and the scars are faded.  For now, it looks so scary.  I just can't imagine that will be my body. 

Some of the women got pretty good results and other not so good.  I keep wondering how my results will compare.  What if I have very horrible results?  I will have to live with that or have it done all over again to correct it.  I know it's only under my clothes, but how do I feel whole again?  How do I feel like an attractive woman again?  I worry about all of these things and I just can't help myself.  I know it's "what's inside" that counts, but I have to face my life being permanently disfigured now and emotionally that's hard.  I keep wanting to have faith that my surgeon can create a miracle and make me look really good, but I don't want to be disappointed. 

Breast cancer is so overwhelming it seems to reach every part of your soul.  It's not just about losing breasts.  It's about re-evaluating your life, your thoughts, your relationships.  It's about fear, faith, courage and hope.  It's about love and life.  It's about dreams.  It's life changing on so many levels that all of those thoughts on top of the difficult decisions you need to make and the painful procedures/treatments you need to go through, just paralyze your ability to cope some days.  It would be difficult enough to just deal with breast cancer, but it effects everything in every aspect of your life. 

I know this is a long and tough journey on a very bumpy path.  I keep asking myself "what am I going to get out of this?".  There has to be more to it than I can see right now.  It's a journey of the body and soul.  I want to believe that in all of this, there will be something positive and good.  I want to believe that breast cancer will bring something amazing into my life in some strange way.  I do believe that all things happen for a reason but sometimes it takes years to figure out the reason.  I hope in time I can sit back and know the meaning in all of this and be a better person in my soul. 

For now, I am trying to face my reality.  I guess I can't really know what my reality will be until I live it.  The photos were just someone else's reality and that won't be the same as mine. I just have to assume and believe that in the end, my reality WILL be good.  My new boobies will be "fabulous", right?

Friday, January 14, 2011

Chemo or not to chemo, that is the question

So I have been waiting for the results of the Oncotype DX test to find out the likelihood that my cancer may return in the next ten years.  This test will also help my doctor determine if chemotherapy would offer benefits to me.  I got the call today with good/not so good news.  The test has three ranges low risk of recurrence (scores 1-17), intermediate rate of recurrence (scores 18-31) and high risk of recurrence (over 31).  When I met with the medical oncologist last week, she said based on my current situation if the score came back in the low range she would not recommend chemotherapy as the benefit would not outweigh the risks.  She also told me that if my score came back in the intermediate range that she could not tell me if chemotherapy would or would not benefit me as there is just not data to make that clear.  If the score comes back high, chemotherapy would be recommended.

I have been praying and praying that the score came back low so that I could avoid putting my body and my family through the chemotherapy.  I just can't imagine my four year old son having to be scared by all of this.  I can't imagine losing my long, long hair and my beautiful eyelashes.  I know that seems vain, but as a woman, those are all things that make use feel feminine and attractive.  It's a part of who I am in some ways.  Don't get me wrong, my hair doesn't define I am a woman, but the thought of being bald makes me completely uncomfortable.  The thought of having everyone that sees me know that I have cancer really makes me uncomfortable.  My illness should be able to be kept private - not publicly advertised.  Why don't they just tattoo "I have cancer" on my forehead too?

So after a long time of praying, I got the call today and my score was 17.  So technically it is in the "low risk" range, but why did it have to be the highest number in the low risk range?  So at a score of 17 my oncologist is going to say that there won't be a benefit of chemotherapy, but at 18 she can't tell me if there is or isn't a benefit?  How am I suppose to feel OK with a score of 17?  Of course, it is Friday and the nurse called me today.  I asked for the doctor to call me back, but no phone call today so now I have to spend the entire weekend pondering this very thought.

I am so tired of reading about cancer and making decisions with no guarantees of anything.  I feel like I am walking on a narrow plank in complete darkness at times and just waiting to fall off.  Everything seems to be such a "fine line" or with just enough uncertainty to make you keep questioning your choices.  I am trying to do EVERYTHING I can to save my life and be here to raise my young son. Why does this have to be so hard?  Why can't anyone tell me something really solid to make all of this clearer? 

When I think of the whole experience of going through chemo, it scares me to death.  But somehow when I think of not doing it, I am scared too.   The purpose of chemotherapy is to attack any cancer cells that exist anywhere in your body.  So at this point there is no way of knowing with 100% certainty that no cancer cells left my breast and moved somewhere else in my body.  If I have the chemotherapy now, I have the opportunity of blasting those remaining cells no matter where there are in my body for good.  If I get no chemotherapy, those cells could already be somewhere else waiting to grow and spread my cancer.  I guess I feel like doing "EVERYTHING" I can do includes chemotherapy.  How will I live with myself if this comes back and I did not choose the chemotherapy?  By then, the cancer will be worse too. 

I don't want fear to continue controlling me.  I am working on having more faith, but these are tough choices that only I can make.  These choices are scary and would put incredible fear into anyone.  Once I make these choices, I have to live with them.  "What can I live with?" is what I keep asking myself.  Down deep I know I will never forgive myself if I don't do chemotherapy and the cancer shows up again somewhere in my body.  I also know there is no guarantee that won't happen if I do chemotherapy.  I guess I know what I should do, I just don't want to.  I need to have this very emotional, scary conversation with my medical oncologist and have her explain why I shouldn't think this way.  I know the chemotherapy has long term risks to my body and I have to consider that too.  I guess I am back to doing what all breast cancer patients do, waiting for more answers.

Thursday, January 13, 2011

Let my faith be greater than my fear

I was reading a book last night about breast cancer survivors and something struck me that one of the survivors wrote.  She simply said her faith was greater than her fear.  When I read that, I just stopped and thought about it.  I really thought about what that meant.  It just made sense all of a sudden.  My fear has been taking over EVERYTHING in the past month.  It has put me into complete panic.  This part has been even more exhausting than actually treating my breast cancer. 

Today I went to church and prayed to God that my faith could be greater than my fear.  I know that I need to focus on what I CAN control in all of this, not on what I can't control.  I can't control that I got cancer.  No one can.  I CAN control the steps I take to treat it, prevent it from coming back and how I deal with all of that.  That is what I CAN control.  I just can't continue to let the fear be greater than my faith. 

I wanted to search for some inspiration because I still feel like my faith is less than my fear. I thought it may help to read of words of inspiration on a daily basis moving forward to build my faith.  It's always so much easier to think about the bad stuff, not the good stuff so I know I must make an effort to let the good stuff in each day.  I googled "words of inspiration for breast cancer" and I found a website with so many amazing quotes and words of inspiration (http://www.quotegarden.com/cancer.html).  Here are a few that really touched my soul:

Cancer is a word, not a sentence.  ~John Diamond
Feed your faith and your fears will starve to death.  ~Author Unknown
Attitude is a little thing that makes a big difference.  ~Winston Churchill
I don't think of all the misery but of the beauty that still remains.  ~Anne Frank
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.  ~Eleanor Roosevelt
Once you choose hope, anything's possible.  ~Christopher Reeve
it's not what they take away from you that counts - it's what you do with what you have left.  ~Hubert Humphrey

Hope never abandons you, you abandon it.  ~George Weinberg

The only disability in life is a bad attitude.  ~Scott Hamilton

We cannot direct the wind but we can adjust the sails.  ~Author Unknown

To fear is one thing.  To let fear grab you by the tail and swing you around is another.  ~Katherine Paterson
Courage is being afraid but going on anyhow.  ~Dan Rather

I know that life is busy and having cancer is exhausting, but there is always just a little bit of time each day to devote to inspiration and positive thinking.  I believe in the power of prayer, I need to believe in the power of inspiration and positive thoughts.  I hope I can continue to devote time on a daily basis to find inspiration and think about the good stuff just enough to make a difference in my spirit.  So I guess "building great faith" is a work in progress for me, but at least I am working on it.

Wednesday, January 12, 2011

Knowledge is power; knowledge is fear

When I first got diagnosed with breast cancer, the first few days I couldn't even allow myself to google "breast cancer" because I was petrified of what I might find.  I wanted to know what I was dealing with, but I was paralyzed by fear of knowing my reality.  After a few days of google abstinence, I gave in and started learning about my disease.  With every website I opened or article I read, I panicked and looked for hope.  I found good things and bad things.  Things that made me believe I would be OK followed by things that made me think this disease would take me at a young age. 

After five weeks of obsessive reading and googling all about my diagnosis, I am saying "enough"!  I feel like I have learned so much which has been helpful in making the right decisions for me, but in addition I have learned so much that has planted panic and fear in my mind and soul.  I needed to learn about the pathology reports, my diagnosis, the treatment, surgeries and most of all my prognosis.  All of that information was a "must" for me as I have been faced with such a long journey with so many decisions to make that will effect the rest of my life.  Not only do I have to make the decisions, but I have to live with them for the rest of my life too and be OK with that.  It's a lot of pressure for sure!

The knowledge of these things gave me the power to come to conclusions and finalize my treatment path.  I feel at peace with my decisions and know I am doing all I can.  I don't think I will look back with regret given my situation and the choices I had before me.  Let's face it, when you have cancer, none of the choices are appealing, right?  Who wants major body altering surgery?  Who wants to go through radiation or chemotherapy?  No one does, but as patients we have to choose these things if we choose life.  These are HARD choices that no one wants to make ever in their lifetime. 

The knowledge also gave me fear.  I turned to breast cancer message boards for information, emotional support and encouragement from others that have gone through what I am going through.  This helped.  The words of encouragement and hope came to me at times when I felt like no one knew what to say or truly understood what I was feeling.  These kind strangers were supportive and loving in a way that touched me more than I can explain.  Somehow it made me feel not so alone in this. 

The fear that came with the message boards and chats were the horror stories.  While many people told their good stories, there were so many others that went on and on about pain, dissatisfaction with surgery results, unhappiness with reconstruction, bad doctors and more.  These are the things that gave me fear and panic!  As I spent more time reading and reading, my fear and anxiety raised.  I would find some messages in there that gave me peace, but more often than not, the messages made me feel worse the more I read.  People talk about how horrible the post operative pain was or how horrible the tissue expanders are and such and I started building those thoughts in my own head.  I think finally realized that I need to go to these boards for emotional support and my past obsession with scouring the boards for information has to stop.  I was so stressed this morning I just dreaded it!

This morning though, something really changed my anxiety about the reconstructive surgery.  My plastic surgeon's nurse practitioner called me to review a few questions I had.  She was so kind, patient and encouraging it was like speaking to an angel.  She answered my page long list of questions and took at least 30 minutes to speak with me.  She reassured me of how incredible my surgeon is and let me know that he did her sister's reconstruction three years ago.  Somehow after I hung up with Kim, I just felt like a big weight had been lifted.  I have complete faith in my surgeon.  He has been doing reconstruction for almost 20 years and he spends 90% of his time doing reconstruction for mastectomy patients.  He works for a National Cancer Institute that is ranked 12th in the nation for cancer treatment.  While I realize not every surgery goes perfectly and there are chances things will not always go as planned, I have faith in him. 

I guess I have come to realize that knowledge is a double edged sword.  Knowledge can bring power but it can also bring fear.  There is such a fine line between the two and it is hard to know where to draw the line.  I guess for me, I am done losing myself in breast cancer message boards and obsessively reading about other people's experiences.  I am not the average breast cancer patient.  I am a young, healthy, strong minded person with an assertive attitude.  I am the kind of person that is up for a good physical challenge and am in great physical shape.  If I can teach aerobics again at 7 weeks postpartum after almost three months of bed rest prior to that, I can have a good recovery from this and good results, right?  I can do this.  Today, I believe that. 

Tuesday, January 11, 2011

This is really going to happen, isn't it?

Today I got the call from the surgeon's office with a surgery date.  My surgery for bilateral mastectomy and immediate reconstruction is scheduled for Thursday, January 27th.  After I hung up the phone, I just cried.  It is really going to happen.  It is making something that seems so unbelievable, believable and real.  I would be lying if I said I wasn't scared to death because I am scared to death.  I feel nothing but fear, anxiety, stress, sadness and at a loss for what things will really be like after all of this.  I just don't know how I will hold it together the night before surgery and the morning of surgery.  How will I hold it together to say goodbye to my sweet little boy that morning?  I just can't picture myself going through all of this, but I don't have a choice. 

Last night I talked to my "breast cancer mentor", a woman that introduced herself to me at the cancer center last week.  She saw me and the look on my face and could relate all too well as she went through the same thing at this time last year.  She asked me to call her if I wanted to talk because she wanted me to know there was life after breast cancer.  We spoke for almost an hour last night and she really amazed me with her encouragement.  The encouragement seems so much more believable from someone you know has actually gone through all of this.

Her name is Kathy.  She is 63 and had a similar diagnosis.  She opted for the same surgery I did.  She said it really wasn't that bad and she was amazed at just how good she felt even when she came home from the hospital.  She was back to work in 13 days after surgery.  She gave me hope and support.  She listened to my fears.  She answered my questions.  She made me laugh.  I feel so incredibly touched by a complete stranger.  What an amazing gift.  I have never had a complete stranger do something so incredibly compassionate and kind for me before.  I only hope one day I can pay it forward to someone else in need that is going through this horrible journey.

Kathy is full of life and energy one year after going through all of this.  She has the most positive attitude about everything.  Right now I am just not there yet.  I am still so scared and skeptical of everything.  I keep praying each day that I can have a sign from God to let me know everything will be all right.  I keep waiting for that one thing that just makes me believe with every ounce of my soul that I will beat this completely.  Maybe it's just the fear right now that is holding me back or maybe it's because it has only been a few weeks since getting diagnosed and all of this is still so raw. 

For now, I count down the days until my life-changing surgery and continue to pray to God for faith in all of this.  I will try to enjoy the next few weeks doing things that make me happy and spend lots of time with my family.  I will try to lose my fears and sadness by looking into my son's happy, innocent face.  I will cherish crawling into bed with my son each morning and talking to him softly while I wake him up.  I will think about the most powerful words I hear each day from my son, "I love you mommy" and know that I am doing the right thing. 

Please God, send me a sign to give me complete faith in all of this.  That would give me a little peace. 

Monday, January 10, 2011

Trying to get my act together

I just can't let this week go by without getting my act together and getting organized for the battle ahead of me.  I really don't feel like doing this stuff, but I have to.  I just can't lay around and feel sorry for myself.  This surgery, treatment and everything else IS going to happen whether I want it to or not, so I have to get moving.

The first thing I did early this morning was open the package on my day-planner pages for 2011 and get them in my planner.  I know that getting my calendar and "to-do" lists set up is the first step.  Now I have to create the never ending "cancer to-do list".  This seems completely overwhelming right now to me.  What a chore.

This week's tasks:
  Schedule appointment with nutritionist (free consultations offered by American
  Cancer Society)
  Read about organic foods/make lists
  Read about foods that fuel hormone receptor positive breast cancer/list of foods to
  Schedule lymphedema prevention course
  Contact my "breast cancer mentor" (survivor that can help me with the months ahead)
  Create final lists of questions for plastic surgeon and surgical oncologist
  Confirm surgery date
  Schedule pre-OP appointments with surgical oncologist and plastic surgeon
  Schedule annual physical (I need to make sure the rest of my body is OK I guess)
  Schedule annual PAP with gynecologist (I am due for this in January)
  Find a good physical therapist that can help me get moving again post OP
  Continue to exercise daily for a minimum of 30 minutes (for sanity purposes)
  Compile a list of things I need to purchase before surgery to make things easy and
  more comfortable
  Head to the book store - books on BC, nutrition, spiritual inspiration/hope
  Call my health insurance company/find out what's covered and not covered
  Plan at least one fun activity for next weekend with my son

I know there is more that I will need to do, but if I can just knock out these things, I will be proud of myself.  I know that tackling things will keep me busy.  I am usually not a procrastinator.  No one told me that with breast cancer you would also get a little bit of procrastination as a side effect. 

Sunday, January 9, 2011

Screaming in the night

Since getting my diagnosis a month ago, I have been obsessed with breast cancer, worrying and freaking out.  My days are far from normal and don't resemble my days before hearing this news.  I feel like most of my motivation to do daily functions is non-existent.  Everything feels like a chore.  I just find myself in a place that is strongly unfamiliar to the person that I usually am.  I don't even know how to identify with this new "cancer person". 

Now, my days are filled with irrational thoughts, fear, sadness and panic.  As I do normal daily functions, there are moments where the cancer is out of my mind, but then those thoughts and feelings creep back in.  It's almost like there is no mental peace anymore.  There is nothing "care-free".   I even avoid putting on make up until late in the day because I usually cry it all off anyway. 

While my days are long and emotional, the nights are ten times worse.   For the first few days after getting diagnosed, I slept a lot.  I was so emotionally drained and depressed, sleep seemed like a good escape.  Me, the person that can't sleep more than eight hours a day, was sleeping twelve hours a day.  Then I had my lumpectomy and sentinel node biopsy surgery and took some pain medications in the following days.  That's when the nightmares started.  I would wake each night hysterical, crying and shaking.  The dreams were so real and in each of them the theme was the same.  I was always somewhere unfamiliar, scary and alone.  I kept trying to call my husband for help either by yelling or calling him on the phone and no matter what I did and how hard I tried, he would never hear me or the phone wouldn't work and I would panic and cry uncontrollably.  It's like no one was going to help me or save me.  At some point, I would wake up with tears all over my face and just sob out loud.  One night at 3:30am I sobbed loud as my husband held me for an hour.  I was just so inconsolable.  He just held me and kept saying "it will be OK, you will be OK". 

Since this started weeks ago, I am so afraid of night time.  I am afraid to sleep.  The night time use to be a time of peace and relaxation after a long and busy day.  Now when I lay in bed and turn the lights out, it turns into complete panic and I just start crying.  No matter what I do, my mind goes to all of the worst case scenarios. My head is filled with questions and fearful thoughts that just won't stop.  Now it is to the point that I put the TV on in bed every night so there is no peace and quiet or any time to have my mind unoccupied.  I watch TV - bad late night TV for hours until finally I just can't keep my eyes open anymore and fall asleep.  Once asleep, my husband must wake and turn the TV off as I never actually turn it off myself.  When I wake again, I am usually scared and just want to have my husband hold me.  I feel bad that since this started he has had no sleep either. 

After another panicked night last night, I asked my husband "what if I can never have mental peace again?".  The thought that I could feel like this forever is like facing and endless emotional torture.  I had my medical oncologist prescribe me some pills so I could sleep at night, but I just hate taking pills.  I even told my husband that I just didn't want to have to rely on medications to get through all of this. Then I quickly realized that this is just the beginning of a lifetime of pills and medicines.  I am going to end up having a huge purse filled with pillboxes or something like a little old lady.  I can't even comprehend all of this.  I just don't know who I have become and what has happened to the life that I knew before the big "C" came along. 

I guess part of the new me has to embrace ways to deal with the screaming in the night and sleeplessness through pills.  This is totally foreign to the person I was, but I guess I will never be that same person again.  This journey through breast cancer is not only about surgery to remove my breasts, hormone treatment and chemotherapy, it's about learning to let go of things that use to be and parts of who I was.  I just don't know how I put all of this together to become a "new me".  This is going to be hard.  After 45 years I thought I knew who I was, but now it's like starting all over again.  I hope at the end of this process I can find a way to identify with the new person that I become and the new body I will have.  I think this is going to take a "shit-load" of serious counseling, really! 

Saturday, January 8, 2011

Finding a little bit of the "old me"

I feel like the entire last month has been some kind of "out of body experience" and that it really didn't happen or something.  I have been avoiding my family and friends, crying, freaking out and just trying to act normal in front of my four year old son.  For all of that acting I have done in front of my son, family and friends for the past month I should be nominated for an Academy Award or something. "And the best award for cancer-acting goes to....."

So today was the first time I taught an aerobics class in weeks.  Because of doctor appointments and the holidays,  I have not taught in about three weeks.  I have to say that it felt like things were almost "normal" again for a while.  I kind of felt like my old self which is the first trace I have had of my old self in a month!  It actually felt good.  I taught my class with smile on my face and got to see all of my friends in my class.  It was nice that when I was there, no one was freaked out because they know nothing about my cancer.  When I am with family and friends I feel like there is a two thousand pound pink elephant in the room that no one talks about - my cancer.  At the gym, no one knows about it and there is no huge elephant in the corner of the room.  It just felt GOOD!  It's the best I felt in weeks!

I don't know how I proceed forward with my friends in class.  I just don't want to tell them I have cancer.  I know I will be out for a while, but I have a foot injury and they may just assume it is surgery for my foot.  For some reason telling the people in my class makes me feel weak.  I know it is crazy, but they look to me to be the strong one, their leader in class, the one to push them when they don't want to be there and a health role model.  Now, I have cancer.  I feel like somehow they will feel sorry for me and see me as weak.  I know I am just having issues dealing with the emotional side effects of having cancer, but somehow it's just hard for me to accept this.  I just can't imagine people seeing me differently. 

For now I will keep praying I don't need chemo so I can fight this disease privately and keep a sense of dignity for myself.  I know it's just me having a hard time with this and other people probably won't freak out as bad as I think they will, but that is the control freak and worry person that I am. 

This weekend my mom is coming to spend time with us.  She is even cooking me a good Italian dinner so I will eat something.  You know when you have an Italian mom, you must "mangia, mangia" or she will not be happy.  I guess I can't disappoint mama now can I?

Friday, January 7, 2011

Only one more "cancer bomb" to drop

I feel so emotionally exhausted at this point.  Each day this week I have told family members or friends about my diagnosis.   I only have one more person I need to tell and I just want to get it over with.  It has been so emotionally draining, it seems worse than the diagnosis itself at times.  It has been so hard to explain every detail and test and the whole long, scary road that I face.  I have cried in every conversation though I promised myself I wouldn't.  I have made almost every person I really care about cry over my illness.  I just feel so horrible about it.

I know that getting cancer wasn't something that I did.  I know down deep inside that it just happened to me and it's not my fault, but along with it brings so much guilt.  I feel like in some way I am doing this to everyone I care about.   I know that sounds crazy because I didn't choose to get cancer, but the fact that I do have it is making everyone around me sad, scared and cry.  This makes me feel horrible, absolutely horrible inside. 

I have always considered myself the person that just took care of herself and helped others.  I am not the kind of person to ask for help from friends and family.  I just push through things and figure it out even if it's hard.  That's who I have been for years.  Now I find myself in this very unfamiliar place that makes me uncomfortable.  I find myself "needing" people to help.  I have swallowed my pride and asked for help from my family and friends and they are eager and happy to do it.  I just don't know how to deal with it.  It feels strange to be on the other side of things and feel so needy, fragile, scared and dependent on others.  It is not who I am.  I have never been that person. 

I guess what I have to realize is that cancer does change everything.  It changes your thoughts, your needs, your fears, your hopes, your dreams and so many other little parts of your soul.  I know I am forever changed because of cancer and I can't go back.  I hope in time I can find a way to embrace the new parts of me that grew out of my cancer.  I am scared at times  I won't like the new me or that people that know me won't understand the new me or why I have changed.  I know I have no control over that just like I have no control over my cancer.  I have to pray each day that I find more peace in my life and not worry about all of the things I can't control. This is hard for a self-proclaimed control freak!!!

Thursday, January 6, 2011

Looking for "signs" from God and angels

Today I dragged my pathetic cancer-ass to the gym.  I usually love my workouts, but now I do them because I know I should.  Once I get there I am OK I guess, but it seems a bit forced right now.  I got to the gym this morning and got on the elliptical for a cardiovascular workout.  Once I got started I looked up in front of me and saw the back of the t-shirt of the women on the machine in front of me.  It had a very simple, powerful quote:

"Sacrifice is giving up something good for something better".

As I pushed myself to workout, I really thought about what that meant, heck I had an entire 30 minutes to ponder that thought during my workout.  For me, the sacrifice becomes my breasts, going through surgery and recovering for a period of time.  My sacrifice also becomes the multiple procedures to finish reconstructing my body in the next year to make me whole again.  My sacrifice becomes not having the energy to be the mom and wife I want to be in the coming months.  The sacrifice sounds so scary and long, but it's when I think about the "something better", it's the gift of a cancer-free life.  A cancer-free life is more than anyone can hope for and want.  I have lived 45 years and have never had to make such a sacrifice in my life yet and still it will only be such a small percentage of my life, maybe only several months or a year.  When I think about that, it all seems like it's so worth it.  It seems like such a small part of the big, big picture.

When I labeled this post "Looking for Signs from God and Angels", what I meant was that I do believe that there are angels among us and that God sends us rays of hope and support in many ways.  Seeing this woman's t-shirt at the gym made me believe there was a reason she was there, right in front of me today.  It makes me stop and think about what this whole journey means.  I do believe that there are signs from God and his work through angels all around us, but you have to look for them.  I do believe that they come to us in our darkest hour to give us hope and support.  I know as I continue on this breast cancer journey, I will keep searching for these signs from God and others to help guide, support and encourage me.  I know that each sign I see brings me more faith that everything will be OK. 

Wednesday, January 5, 2011

Dropping more "cancer bombs" and "ripping off band-aids"

So now that I have told my family and my husband is telling his family, I have to move on to friends.  This is the worst agony ever!  Telling this story over and over again and crying.....  When they tell you that you have cancer they don't say that this is one of the side effects - huge anxiety and grief over telling your loved one's you have the "Big C".  It just never ends.

Why is it that when you get all psyched up to just "rip the band-aid off" (and tell someone), you call and they are unavailable.  You get voicemail.  UGH!  Do you leave a message like "hey, it's me!  Called to see how your holiday was since I have been avoiding you for weeks - oh and by the way, I have breast cancer.  Call me back!  Ciao!". 

I know in some way I will feel better once I get this news out to the people I care about.  What will bring me comfort is knowing they will be praying for me to be healthy and recover well.  I believe in the power of prayer and have never really asked all the people I care about to pray for me.  I can't imagine having that many people pray hard for my health all at one time.  I know it will bring me some comfort despite that fact that all of this sucks.

So today I did finally get back to the gym . My surgeon told me it was finally OK if I worked out again.  I just really had no desire to go, but I made myself.  I know it helps emotionally, but it is a struggle.  My arm didn't hurt much today.  It is definitely feeling a lot better than the past few days.  I do feel like I have more energy today after my workout so I will vow to do it as much as I can as long as my doctors tell me it is OK even if I don't want to.  It's hard to be motivated to go and workout, but I know I have to relieve some of the stress I am carrying over this disease and exercise is a major stress reliever.  I think I will also start yoga.  I have always wanted to start it, but never had the time.  I am making time now that I am taking inventory of my life!  I have been reading that they are doing studies in regards to breast cancer healing and such in relation to including yoga as part of the treatment. I think it can only help bring me physical and mental strength and a more positive feeling overall so I am going to do it!  Why not????

Tuesday, January 4, 2011

I dropped the "cancer bomb"

This morning I just knew it was time to find a way to tell my family my horrible cancer secret.  I just laid on the couch for hours this morning thinking "I just can't tell them.....".  It was agony.  I know I have kept the secret for almost a month now because it was the holidays and I just didn't know what was going on with all of the test results and my prognosis.  Now that I have most of the information, it's the right time to tell them.

I called my brother first.  I wanted to tell him in person, but he's a lawyer and I never know if he's going to be in court or out of the office or in the office.  He has kids at home so stopping by to talk would not be private at his house and his kids are old enough to know something is going on if we look upset.  I just bit the bullet and called him.  It was hard.  I tried not to cry, but I did.  He was shocked and supportive.  He just listened and said such encouraging things.  He vowed to be there for me and my family and support us any way he can.  I told him I loved him and he said he loved me too before we hung up.  I don't remember the last time I told my brother I loved him.  It's sad it took cancer for us to say that.

Now that I had the "warm up" of telling my brother it was time to tell my mom.  I drove to her house as I knew she was home.  When I got there, she just talked and talked about all the stuff she had going on and my heart was pounding so hard, it almost jumped out of my chest.  I tried to focus on what she was saying, but I just wanted her to stop talking so I could tell her.  A part of me wanted her to keep on talking so I wouldn't have to tell her.  It just "sucked".  I can't even think of a more proper word to use.  No daughter should have to tell her mom she has cancer.

I told her my news as I held her hand and we cried.  She took it well but was scared for me and worried for me.  I told her everything I had been through since December 8th and what my treatment plan would look like.  I showed her my surgery scar and assured her I was feeling pretty good from my 12/23 surgery.  She really had no idea this was going on other than the fact that I had not been calling her as much lately as I usually do.  She never thought it was because of breast cancer.  My mom just simply asked "how can I help"? 

As I ended the conversations with my mom and brother, I told them they had to remember a few things:
1.  I don't have cancer any more - we just have to keep it that way.
2.  Remember the 90% and remind me of that when I waver or don't believe it (my doctor says I have a 90% chance of no recurrence with my treatment plan and situation).
3.  Don't tell me "you are strong".  I hate that.  I am not strong, I am human.  I don't want to go through having cancer.  I am not coping well with it - maybe in front of you, but I have meltdowns, cry daily, can't sleep, can't eat.  No one wants to deal with it.  No one can get through this being "strong" though you may think so or it may look that way on the outside.  It just sucks - period!
4.  Don't tell me any cancer stories.  I don't want to hear how your friend's mom died from breast cancer or how she fought it and is doing fine.  None of that matters as each situation is different.  I don't want to hear ANY cancer stories!
5.  Call me when you want to, but don't take it personal if I don't pick up or call you right back.  Some days I just don't want to see anyone, talk to anyone or explain what is going on.  I am not always up to talking about this or even daily trivial things.  Please respect my feelings on this and don't take it personal.
6.  I will need you to help me and my family.  Please reach out to my husband as he keeps so much of this inside and he will never tell me how scared he really is.  If you call him or talk to him, you don't have to tell me.  What is said can remain between you two and I don't ever have to know.
7.  No telling anyone about my cancer unless I agree to it.  This is MY cancer.  I am not ready to go public with my pathetic story. 

The both agreed to my list of requests.  The best part was when I left my mom's house.  I gave her a huge hug and told her I loved her.  She said "I love you too.  Good-bye weakling!"  I just laughed and smiled.  That's my mom!  She's the best.

Monday, January 3, 2011

There are angels among us, really

Today I went to the cancer center to meet with the doctors again (my new favorite past time- ha ha!).  As I sat in the waiting room with my husband, I got nervous again.  I said to my husband, "what could I be nervous about?  They already told me I have cancer?"  He just kind of laughed and said "you are right". 

As we sat there in the lobby of the breast center, there was a woman looking at me.  Then she would look away and I would catch her looking at me again.  I finally said softly to my husband after I started feeling uncomfortable "I feel like everyone is looking at me like they know I have cancer. Why are they looking at me, because I am the youngest person here?".  He said "don't worry about that". 

So time went by and the woman got called back to see the doctor. We continued to wait a very long time, in fact so long that the lady actually came out of her appointment and then left while we were still sitting in the lobby waiting to be called back.  About two minutes later, the woman came back and walked directly over to me and said "Hi, my name is Kathy and I just know the look on your face because I have lived that and I left my appointment and I just had to come back to talk to you".  She sat down next to me and told me she was where I am right now one year ago.  She told me her diagnosis and how her journey had gone.  She told me there is life after breast cancer and that I can do this.  She told me she was back to work eleven days after surgery.  I teared up as she spoke to me.  I told her I was scared because I have a young son.  She assured me life would get better.  She was so warm, kind and positive.  She gave me her phone number and e-mail address and said she would love it if I would call her so I could talk with someone that understands.  I was completely overwhelmed.  It really touched me.  I have never had a complete stranger ever offer me so much compassion.

After she left, all I could think of is the Alabama song called "Angels Among Us".  I truly believe that God does send angels to us in our darkest hours.  I plan to call Kathy this week and thank her for her kindness and compassion, and speak with her about her experience. It was truly a gift having that happen today.  If you just don't know the song, the lyrics are full of hope. 

Here are the amazing lyrics:

I was walking home from school on a cold winter's day
Took a shortcut through the woods and I lost my way
It was getting late and I was scared and alone
Then a kind old man took my hand and led me home
Mama couldn't see him, but he was standing there
But I knew in my heart, he was the answer to my prayers

Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love

When life dealt troubled times and had me down on my knees
There's always been someone there to come along and comfort me
A kind word from a stranger to lend a helping hand
A phone call from a friend just to say I understand
Ain't it kind of funny at the dark end of the road
Someone lights the way with just a single ray of hope

Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love

They wear so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need

Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love

Saturday, January 1, 2011

My New Year's Eve

This year I just couldn't get the desire up to go out and spend time with friends.  We had invitations to do things with friends, but I just didn't feel like.  Keeping my breast cancer a secret is really getting hard for me.  It's so hard to smile, act happy and laugh with people I care about and know that next week I am going to drop my "cancer bomb" on them.  I feel like once they know, it will forever change everything.  I keep thinking they will look at me different or feel sorry for me or only think about "cancer" when they look at me. I keep thinking they will think about my disfigured body or wonder what my new boobs look like.  I know all of this sounds nuts, but then again I am a woman.  This is what we do right?  We fabricate all kinds of crazy scenarios in our heads that probably never will exist and we obsess about them.  Well, at least I know that is what I do.

So, now that we decided we were not going out, what were we going to do?  I decided to just do something fun with my son and husband.  I decided we would have a picnic and drink prosecco and apple juice out of champagne glasses.  My husband and I (being food snobs....) made some wonderful veggie and cheese pannini's.  For my son I did more traditional picnic food - hot dogs and potato chips.  We sat on the kitchen floor, just the three of us holding our champagne glasses and toasting "Happy New Year".  My son insisted on doing "cheers" and a glass clink on every sip!  He loved it.  It was one of those special moments I will cherish no matter what the future holds. 

After the picnic, we got under the special Christmas blanket on the couch and cuddled together and watched a movie.  My son fell asleep in an hour cuddling on me.  It was the best.  I could only look down and think about just how much I loved him and how much I want to be here for him. 

This morning my son asked "when can we have another picnic and drink out of those special cups?".  I just laughed and told him we would do it again soon.  I think this may be the best thing to cheer me up when I am down...a simple picnic.  Why do I feel like we will be having a lot of picnics in the months to come???