My letter to Gabrielle

Gabrielle Ryan (AKA Gabby, Gabs, Gaba-licious, Lishy-Lou, Breeshka, Brielle, Briella-Bear, and every other silly little nickname I have called you over these 10 years),

      Ten! Double-digits! I am really not sure when I blinked and you became a DECADE old! I know you have been waiting for this birthday FOREVER, I on the other hand, have just been hit with the reality that my little Princess, isn't quite so little anymore. There are things I want you to know and things I want you to keep with your forever, no matter where this crazy life takes you. Part of this is being pulled from the "letter" I wrote you when I was sick, the rest is everything in my head right now that is preventing me from sleeping (and yes, I am crying as I write this).

      MAN! What a crazy 10 years this has been! Time really does fly (believe people when they say that to you), I wish I could freeze time right at this moment. October 30, 2006 at 5:42pm, that is the moment you forever changed my life. I had always heard everyone say "oh just wait, when you see your baby girl for the first time, your life will change forever", I had my doubts. I shared my body with you for 9 months, I felt you move and tumble, I worried about you every second you were in there. I was already deeply in love with you. I didn't think I could love you more than I already did. Boy was I wrong! When you decided to come into this world 1 day late and not wanting to take your first breath (for by the way what felt like an eternity, as doctors and nurses were scrambling around grabbing tubes and calling for the NICU to get ready). I knew in my heart, this girl is a force to be reckoned with. Everything everyone said about that "magical" moment, they were spot on. You took my breath away, you made me speechless, you made my heart full, you made me a Mommy. I had no clue what this insane ride we call life was about to throw at us.

     I have carried around guilt and sadness in my heart for you. You had to grew up so much quicker than other kids your age, for that I am sorry. You were only 4 years old when our family was flipped upside down with the cancer diagnosis. One thing you don't know, the only thing that popped in my head when Dr. Pahnke said "Amy, this is cancer" was you and Cole. The only words I could remember were "Gabby and Cole". I didn't cry when he told me it was cancer, I just asked if I was going to die. The only thing I could mange to say was your names. Daddy and I made a decision that evening to NEVER keep anything from you. We told you everything that the doctors told us, we told you every step of what was happening. You were so small. You asked me that night "Mommy, are you going to go to Heaven", that sentence has haunted me for the past 5 years. That was the night you changed overnight. You went to bed 4 years old and you woke up a mini-adult. For one entire year, you took care of me. You were the adult and I was the child. You took care of Cole, you helped Daddy do things around the house. That was the year you stopped playing with toys, that was the year you grew into such a beautifully compassionate person. That was the year I knew in my heart, this girl is going to be something very special with her life. It took me 5 years to realize cancer didn't ruin you, it made you an incredibly strong, compassionate, determined person. Enough about that, lets not dwell on the past right. 

    I was asked to write letters to you and your brother 5 years ago, I never gave them to you. So, here on the day before you turn 10, I am going to finally share with you some of the words I wrote for you. I am going to skip the letter part and just share my hopes for you. These are things that now you are turning 10, I feel are important for you to know and always remember. Keep them with you, when you are scared because lets face it, life is scary. Remember these. When you are sad because, life will be sad. Remember these. When you are frustrated because, I think you know, life will be frustrating. Remember these. Here goes:

1. I WILL NEVER STOP LOVING YOU:

    Not when you make a mess and don't clean it up, or when you roll your eyes. I will always love you enough to teach you, to listen to you, to guide you. I will always be here to wrap my crazy emotional arms around you and tell you how very proud I am of you, even when you are not proud of yourself. I will always be here when you need me. My love for you goes deeper and higher than anything I could ever imagine in this world. You are among 3 other kids that had my love and my heart before I ever saw you. NOTHING you ever do or say, will change the love I have for you. 

2. STOP WORRYING:

    Mommy has wasted a lot time worrying. My worrying started when I was a little girl. I worried about being sick, or not being good enough. Worrying does nothing for you. Instead, think of all the positive things life has to give to you, don't be like me and focus on the negative. Don't waste your years dwelling on the "what if" theory. Live your life, take chances,  do the thing that scares you a little. This world we live in has so much more to offer than this corner of a town we live in. Mommy worries enough for the entire family. Promise me you will do these things, and I in return will promise and try and let you live that life. I am still learning too.

3. DON'T TRY TO PLEASE PEOPLE:

    You cannot and will not be able to make everyone happy. I have learned, you cannot make someone happy when you yourself are not happy. If you don't want to do something, please don't do it because you think it will make someone else happy. Do what makes YOU happy. This is your life, not theirs. 

4. BE KIND, NOT RUDE:

    This one is a bit difficult. Yes, everyone has a personality, no two people are alike. Learn to accept and love people for who they are. Be polite, be respectful, be humble, BE KIND. I ask that you please always choose kindness above everything. Being rude has never gotten anyone anywhere, this is coming from a former mean girl. I know this one all to well. As you are getting older and your trying to fit in and find your place in this world, remember that HUGE caring heart you have. NEVER make anyone feel like they are beneath you, or that they are not beautiful or important, especially to make your friends happy. Choose kindness my sweet girl.

5. DON'T HOLD GRUDGES, FORGIVE AND FORGET:

    No matter how careful you are, how thoughtful you are. There will always be that situation where you get hurt, not in the physical sense. At some point, you will feel hurt from your friends, from us, from Cole, from Ethan and Maddy, Aunt Mandy and Uncle Matt, even Grammy and Grandpop, they will all hurt you at some point (may not be intentional but it may happen). People will let you down at times. Stand up, forgive them, and move on. Life is too short to hold grudges. Whatever it was will not matter in the long run. And same applies to you, when you hurt someone, apologize! Always remember your pride is not more important than the pain you may have caused someone. 

6. RESPECT YOU:

     Respect yourself, please! If you don't respect yourself or appreciate yourself, you cannot expect anyone else to. Don't EVER let anyone tell you you are not good enough, because you are. Don't ever be afraid to walk away. This life will be crazy, people will be crazy, remember who you are and never lose sight of that. 

7. DON'T EVER GIVE UP:

    When you feel like giving up, feel discouraged, have just plain had enough, DO NOT GIVE UP! You have proven time and time again how amazing you are. Your level of thinking at 10 surpasses anything I can even comprehend. The goals you have set for yourself, are goals most adults don't even have. You have dreams of becoming a Pediatric Orthopedic Doctor (you have been saying since you were 5 that you wanted to be a doctor and I believe it. I see it in your future) don't give up on that dream when things get tough. Pick up the phone, call me, call Daddy, Cole, Aunt Mandy, Uncle Matt, Ethan, Maddy, Grammy. Don't be afraid to ask for help reaching your goals. It's very easy to throw the towel in, but trust me kid, pushing through is a lot better than giving up.

Lastly: KNOW YOUR WORTH:

    You're beautiful. You're strong. You're better than me in every way possible. You're something special. You're smart, you're funny, you're talented, you're caring. Please don't ever let anyone tell you or make you think differently! 

So, to end my emotional "letter" to you, I will say one last thing. Gabby, when I first laid eyes on you 10 years ago, I had no idea how lucky I was. Thank you for being the person you are. Thank you for teaching me, for letting me bad a parent parent and not hold it against me, for loving me even when I am finding it difficult to like me. I could not have in a million years guessed that I would be so lucky as to have the incredible daughter that I do. I love you Gabrielle Ryan! 

"Kid, you'll move mountains" - Dr.Seuss

The truth about 5 years

 
  I cannot wrap my around the fact that this month I will hit the five year mark of having been diagnosed with stage III breast cancer. FIVE years!

  I still remember that day in March in 2011 like it was yesterday. I remember seeing a surgeon at 12:00 in the afternoon and being told whatever it was that I was feeling in my chest was nothing. He told me because the ultrasound tech did a bad job on the ultrasound, he was sending me back for a mammogram, just because. I had no family history, I was 31 and healthy. He just wanted to prove a point. After getting the mammogram a lady asked me to please return to Dr. P's office, there I sat in an exam room with my friend Stephanie (Ryan went back to work because we were told this was nothing). I asked Steph to grab the mammogram report off the door so I could see it. All I saw was "CATEGORY 5. HIGHLY SUSPICIOUS OF MALIGNANCY", that's all she wrote. I went numb. I heard him say the words "this is cancer", I just stared straight ahead and all I could manage to say was "Gabrielle and Cole. I cannot die". I remember staring at my phone and not having a single clue as how to use it. I eventually managed to text Ryan "I have cancer". That's all it said, he called me, I couldn't answer. I walked out of the surgeons office that day and into his waiting room where Ryan was coming through the door, I collapsed in his arms and just kept saying "Gabby and Cole, please don't let me die. Why is this happening". Everything from that moment on moved super quick, I went from finding out I had to cancer to starting chemo in a weeks time. God, I remember that first chemo treatment, the nerves, the tears, the uncertainty. Waking up the next day feeling like I was very hungover and feeling like I had the worst flu of my life. I remember the collapsed lung, the chest tube placement, the sleepless nights. I think I cried every night after the kids went to bed for a good year. I remember one day, about 3 chemo treatments in, asking Ryan to come in our bedroom. I asked him to sit on the bed with me and I lost it (more than the usual lost it) I told him I couldn't do this anymore. I was not strong enough, I couldn't take being this sick. I didn't want to have to fight to live. I didn't want to cry every single time I looked at my kids, I didn't understand why this was happening and I just wanted it over. All he did was tell me to think of how those words will affect Gabby and Cole. They were 3 and 4. They needed their Mommy, he needed me. After that day with Ryan, I got angry. Angry because he was right, I was not going to let someone else dance with Cole at his wedding, I was not going to let someone else help Gabby pick out her wedding dress. Anger is what got me through the rest of the treatments. I wasn't going to write a blog post about five years, partly because I am superstitious that since I haven't hit five years talking about it is bad luck. Partly because I thought I was over it. Well, if anyone read this blog, they may recall a post back in 2011 when my therapist (who was also a big reason I was able to continue and fight) he had me write "goodbye letters" to Ryan, Gabby, and Cole. Well, looking through my hope chest the other night, I found them. I wasn't going to open them, I was actually going to just throw them away. However, I did in fact read them.

  I can't help but be stuck in my own head this month. I know the reality that five years is just a number, I know that cancer can return at any point. I know I will forever live with this mental game. I also know that for anyone who has heard those dreaded words "this is cancer". Whether it be you personally, a spouse, a child, a friend, a parent, a sibling, anyone close to you, five years is a significant achievement. It means the chances of it actually coming back are a lot lower, it means you made it to the mental finish line. I cannot wait for March 24, 2016 when I can say it's been officially 5 years. Until that time though, I am having a rough go around. I am worrying about little thing I feel, I am worrying about things out of my control again. Every March my anxiety spikes a tad, this March, my anxiety is off the charts! I know in my heart all is going to be fine, I just wish I could make my head believe the same things!

Cancer, Anxiety, Remission. There's a combination......

Anyone who knows me (or has read my blog) knows this blog is my catharsis. Whenever I am feeling anxious, sad, mad, scared, anything that relates back to my diagnosis, I open my computer, tune the world out and let the words and thoughts flow. This entry is no different. My posts have gotten very few and far between, which is good. I know I "ended" my blog last year, but for me, I cannot walk away from it. It's the one place I don't feel judged, the one place I feel like I can be as open and honest as possible, also it's a lot cheaper than sitting on a couch in an office pretending like I am letting everything out.

Any person who has ever heard the words "you have cancer" or have heard those words spoken to a loved one, understands what an emotional journey this is. A journey that, unfortunately, doesn't stop after the treatments stop. Don't get me wrong, I am beyond blessed and happy that in 4 months I hit the 5 year mark. I know the significance of that milestone in the medical world, I also know the reality, it's just a number. I secretly struggle just about everyday still with the anxiety of having been diagnosed at 31. Maybe it is because I was diagnosed with Stage III cancer and well there is only one more "stage" beyond that. Maybe it is because I am an anxious person to begin with and this certainly doesn't help an anxious mind heal. Maybe it is because I have worked in Oncology for 10 years and I feel a thousand different emotions and see every possible outcome on a daily basis. Maybe it is just the plain fact that once you have walked in these shoes, the fear never goes away.  Or quite possibly it is just because I have an appointment with my oncologist this week and I feel like my luck is running out. I think a person who is diagnosed with early stage cancer and a person who is diagnosed with locally advanced cancer handle anxiety differently (as it would be different for a person with metastatic cancer). I did read an interesting article (that sparked my thoughts on this subject) about how the anxiety of having had cancer increases as the years go on, instead of decreasing like your chances of recurrence do. I also get more anxious around my appointments, I am still seen every 3 months by either my surgeon or my oncologist, I try to not get worked up about these appointments, however I think in my mind I am waiting for that one appointment where I hear that word "recurrence". I fully understand how low my chances are of cancer returning at this point, but that doesn't really ease my mind. I guess, like I said earlier, I feel like at some point my luck is going to run out. All of these increased anxious thoughts and feelings could also be related to early menopause. Thanks chemo!!!

A lot of people have been asking me when my surgery date for the hysterectomy I decided on is. Turns out, after an appointment with my GYN over the summer and some additional soul searching, I decided against the surgery. Well,  apparently I may have made the right choice. I was informed having gotten chemotherapy at a young age puts you at an increased risk for going into menopause early (my body did go through a temporary menopause while I was receiving chemo. That was a fun summer). I have been experiencing quite a few symptoms that I just chalked up to Tamoxifen (it is a tricky little pill) or just my anxiety problem. However, after talking to my doc, turns out some blood work is needed as these symptoms are also indicators of early menopause. I mean hey, why not at this point. I have mixed feelings on this. I also was told Tamoxifen can put you in a menopause like state as well. So there's that too.

I have done some research (my absolute favorite thing) on cancer survivors who had the same diagnosis and treatments that I had, turns out an increased anxiety level a few months before that milestone 5 year mark is the norm. I can justify it in my mind, the day you get your cancer treatment plan in place nothing is looked at past 5 years (at least not 5 years ago, cancer treatments have changed, things may be different now. Tamoxifen is now 10 years instead of 5). I just had my binder of my medical records out the other day and read my first cancer patient office note. It stated if I had no treatment what so ever I had a 65% chance of NOT surviving 5 years. With the adjuvant chemotherapy, radiation, mastectomy and Tamoxifen route I took, I had a 75% chance of being alive and disease free at 5 years. 75% is wonderful and those are odds that I am more than happy to have, but that 25% still lingers in my head. Especially when 5 years is in 4 months. I get no one is promised tomorrow, I think I just struggle with the statistics. In my research, I also read that even though the fear or uncertainty will not fully go away, once you get past the milestone year, the anxiety level starts going down. I really hope there is truth to that, not sure I am going to make it to March with this level of anxiety.

Nana

"Love is the greatest gift that one generation can leave to another"-Richard Garnett

  Anyone who knows me, knows I am not really good at speaking my feelings. I am better at writing down what is in my mind. I find it easier to express emotions through writing.

  On Saturday my husbands family lost their matriarch. Ryan lost his Nana, my mother-in-law, Pam, lost her mom. Gabby and Cole lost their great grandmother and I lost a woman who showed me so much in the 16 years I knew her. Nana was a strong, caring, compassionate, loving, stubborn, and big hearted person. From the very first time I met her, she was Nana. Not Mrs. Ridall, not Ms. Evelyn, but Nana. She welcomed me into her family with open arms, she always made me feel comfortable, she always made me feel as though I was her grandchild my entire life. She had a special quality about her. No matter what she had going on in her life she always made time for you. One thing that always stood out to me was how much she loved her grandchildren and in return, how much her grandchildren loved her. 

 When I received the phone call on Saturday that Nana wasn't doing well, my heart broke. My heart broke because Ryan was 2 hours away at a baseball game he couldn't leave, Pam and DR were 6 hours away trying to get home as quickly as possible. I headed to the hospital (with my sister, because I called her frantic) to sit with Nana. I was not prepared for what I walked into. As I walked into the room and saw Nana it took every single ounce of everything I had in me to keep it together. I stood there for a few minutes looking at her and trying to figure out what the right things to say were or what the right thing to do was. 

 As difficult as it was seeing her like that, I am so very thankful and honored to have gotten to spend the last few hours of her life with her. She asked to hold my hand at one point and I sat on the hospital floor (yes, germ-a-phobic me sat on the hospital floor) and held her hand and rubbed her head while she replayed memories of her life in her mind. She wasn't able to really speak, so instead I just reassured her that everything was going to be ok, that her family loved her so very much. I thanked her for showing me what unconditional love looked like, for raising a fantastic daughter who was an equally as wonderful Grammy. I thanked her for having a hand in raising Ryan and I told her he was the most incredible person I knew. But most importantly for me, I told Nana how much I loved her (again, I am not good at expressing my feelings). I sat on that floor holding her hand and rubbing her head for 2 hours. That is 2 hours of my life that I will forever cherish. 

 When we lose someone we love, we have to find the beauty in the situation. Watching someone take their last breath is not easy, being there the moment they slip away is haunting. However, just like I have always done in my life, I turned to my sister. She told me to think of that last breath as a milestone. Nana took her first breath in hospital room surrounded by people who loved her deeply, she lived an incredible 82 years, and then took her final breath in a hospital room surrounded by those who loved her deeply. Her life came full circle. Her memory, her amazing qualities, her values, and her will forever live on in her children, her grandchildren, her great grandchildren, and anyone who was lucky enough to have her in their life.

"Don't cry because it's over, smile because it happened "-Dr. Seuss

Rest in Peace Nana, I love you.

I have made my decision.....

"Sometimes the questions are complicated and the answers are simple"-Dr. Seuss

Oh, how powerful our brains are! One of my biggest flaws has been (and unfortunately always will be) my need to over think every situation. It's human nature and it's in all of us to make things much more complicated than need be. I have struggled and obsessed over the question of ovarian suppression vs Tamoxifen. What is right for me? What do the books say is the best option? What would? What if? How come? How long? I have thought so much that I wore myself out.

I have talked to friends and family, I have created a folder (anyone who knows me, knows my love of calendars and folders. If I can create a folder on something, I am all about it). I have printed out just about every single article I could find on the benefits of ovarian suppression in ER positive breast cancers, on menopause at 35, on hysterectomies, on oophorectomies (removing just the ovaries), on the recovery, on the surgery. I have read and re-read every line. I have highlighted statistical facts, I have highlighted opinions, I have highlighted information solely because it looked important. I have been consumed with this for over a week. I had a mini break down the other night over this. I am pretty sure I just mentally wore myself out. 

The other night as I was driving home from work, I was thinking about how I make this choice. I started crying in my car and when I got home I held it together during dinner, then I went into our bedroom and I lost it. Ryan came in and asked me what was going on. I broke down and told him everything. Every fear, every reason I did not want to get my ovaries out, every reason I did want to get my ovaries, how I know I am making this bigger than need be, how I wish I was never told about this new option, how I NEEDED him to tell me what the right thing to do was. Ryan just simply said "do what's in your heart Amy".  I felt like saying well, if I knew that I wouldn't be sitting her crying! However, when he said that, something inside me told me, my answer wasn't in research papers, it wasn't in Google's search engine, it wasn't in any of the places I was looking. To some this might be a no brainer, to some this might seem like I am making a mountain out of a molehill. It's just my head, my heart, and my gut are telling me different things. My head says stay on Tamoxifen. My gut says do the surgery. My heart, felt torn between the both. 

I decided I needed to find some clarity. I needed something to help me make the choice that was right for Amy. As I sat and thought about where do I find this? Do I pray (well, honestly I am not religious)? Do I listen to the advice I have gotten from friends and family (after all they do care about me)?  Where does clarity come from? Then sitting on the couch staring at my computer screen, I decided to re-read my blog. Now, I have only re-read this blog one time and honestly after I was done, I felt sad. I logged in and started at the first entry, March 24, 2011. By the time I had gotten to round 3 of chemo, I knew my answer. I think I always have, I just needed to be reminded. Having gone through everything I have, I mentally blocked out all the bad, all the feelings of sadness, all the feelings of fear. By this I mean from a chemo point of view. I still and will always have feelings of sadness and fear related to cancer, but re-reading the beginning of the blog, when things were still new and my feelings were still all over the place, I instantly in my gut felt like it was happening all over again. I remembered very vividly all those feelings and fears. Then I found the post, the blog post where I sat in my oncologists office in the very beginning of chemo and asked if I could have my ovaries removed. After learning my cancer was 65% estrogen positive and estrogen was made in my ovaries, I wanted them gone too. At that point I was told there was no statistical evidence that removing your ovaries was any better than taking Tamoxifen. Well, look now, there IS evidence that this option can be more beneficial. All I needed was to remember that I told myself from the start, I didn't care how drastic or aggressive it was, I wanted to do every single thing that would make my recurrence rate the lowest. 

So, surgery it is. I can handle menopause at 35, I am kind of thinking it will be nice to go through it young and get it out of the way. I already have hot flashes, I know what it is like to go from a comfortable body temp to pins and needles and feeling like a fire is rising from your chest up. I am already moody from Tamoxifen (I hope it cannot get any worse, there are plenty of days I cannot stand myself). I am already over weight from Tamoxifen and poor lifestyle choices I have made since this all started. I can handle this. I am strong, I am stubborn, I am resilient. I have asked how soon this needs to be done, since it's not emergent (I am 4 years out from chemo in July) but should be done sooner rather than later, I have decided this fall is a great time to go under the ol' knife again. I would like to work hard and drop at least 10lbs (I read, shocking right, that if you go into menopause over weight the side effects are worse). 

I feel good about this choice. I know it's the right one for me. I will meet with my Gyn in the next few weeks and discuss which surgery he thinks is best, total hysterectomy or an oophorectomy. And then I will pick my date. Four years ago, I told myself being a victim to cancer was not an option. I was lucky enough to be diagnosed before it had spread, I was lucky enough to be get chemo and surgery and to be put into remission. I was and still am willing to be as aggressive as possible to make sure I stay in remission. I have 2 amazing children who are becoming their own and who continue to amaze me everyday with everything they do. I am not willing to possibly jeopardize not being there for every game, every dance competition, every argument they have. I am not willing to not be around to continue to annoy the crap out of Ryan ;) We have been married for only 12 years this year, he has a lot more of me to deal with!

So, like I said in the beginning of this post, "sometimes the questions are complicated and the answers are simple"- Dr. Seuss. 

Decisions, decisions, decisions

So when I started this blog in 2011, it was a place for me to write down my fears, get out my frustrations, to help me deal with everything I was facing and to chronicle every step of the "cancer journey'". I stopped writing on here last year because, well life was good. No need to chronicle the every day activities of a normal Mom to two little ones. Well, the other day I had an appointment with my oncologist, still good 3 and a half years in remission, but I do have another decision to make. The last major medical decision I had to make was saline vs silicone vs gel implants. I hate when I feel confused and unsure of what to do. I hate when my mind is at a crossroads and I have absolutely no clue which "road to take".

There continue to be amazing advances in medicine, especially with cancer and how to treat the disease. There constantly are studies being done on the treatment of breast cancer. The newest one to come to light (or at least be brought to my attention, because I fall in the criteria) is to put young women in menopause who have/had ER positive breast cancer. Now, let me recap, it has been awhile since I have written on here, I was diagnosed at the age of 31 with stage III locally advanced estrogen positive, HER2 positive, infiltrating ductal breast cancer. I have undergone 6 rounds of chemotherapy, radiation to the right side of my chest, a bilateral mastectomy with reconstruction and now I take a pill everyday for 10 years. I was (and still am) comfortable with this treatment option. However, like I said, medical advances are made everyday. The new "thing" to do, is women who were under 35 at age of diagnosis, whose cancer was aggressive enough to require chemotherapy and who are premenopausal after chemotherapy would be to shut their ovaries down and put them on an aromatase inhibitor. Now, I stated I take a pill everyday for 10 years. I take a pill called Tamoxifen. Its an evil little pill! Since my cancer was estrogen positive (meaning it needs estrogen to grow) the goal would be to block the production of estrogen in my body. Tamoxifen, as I have been explained to, acts like a bonding agent and blocks estrogen. I was told to visualize the cells in my body being little key holes and estrogen being the key to fit all the holes. Tamoxifen goes in and blocks the keyholes so the keys (estrogen) cannot fit and cause problems. I have been on this pill for 3.5 years, I have experienced and lived through the worst of the side effects, so far anyway. I have gained roughly 25 pounds, I have hot flashes, I am moody, etc.. Nothing that is too much to handle, the way I look at it, I can handle all those pesky things if it means keeping cancer at bay. There is also effects of being on this medicine for a lengthy time, the increased risk of uterine or endometrial cancer, blood clots, stroke, however the chances of those incidents occurring are small (I think). Well, now that this new ovarian suppression and switching to a new pill has come to light, I don't know what the right choice for me is.

If I decide to go with ovarian suppression, I am not willing to get a shot every three months to put me into menopause (I don't like taking medicine, I tolerate Tamoxifen because I have no choice). The route for me would be to have my ovaries removed, since I won't need the other parts, I would actually end up getting a total hysterectomy. Another major surgery. I would also be thrown directly into menopause the moment I wake up from surgery. So, instead of my body naturally and gradually going into menopause (like most women) I was told it would like hitting a brick wall at 60mph. I would have all the effects of menopause, and  I would have to start all over on a new pill for 5 years. Doesn't sound bad, right? Until the kicker, the potential side effects of "throwing" me into menopause would be osteoporosis, heart disease, bone pain, diminished quality of life. Joy! I understand women get hysterectomies all the time and they do fine, but they get hysterectomies because of gynecological reasons, so the hysterectomy is beneficial to them and potentially help their quality of life. I however, do not need one for any reason other then to shut my ovaries down and shock the hell out of body again (it can't really be worse than chemo, right). I also understand these are just "potential" side effects, but the thing with me is, I read every warning label, I research everything, I am that person that NEEDS to know what could happen. Even if 1 person out of ten thousand had a simple side effect/reaction I want to know. I like to be prepared for everything, no surprises.

While the study does show a decreased chance of cancer recurrence after ovarian suppression, it doesn't show an overall survival advantage. Basically, the chances of cancer coming back drop (not significantly but it does drop) and the chances of dying from heart disease or some other complication increase (at least that's how I am understanding it). Unfortunately, tamoxifen used to only be taken for 5 years, a new study proved that extending that to 10 decreased cancer recurrence rates. Since the 10 year Tamoxifen trial and this new SOFT trial are fairly new, there is no statistical evidence stating which one is more beneficial. See why I am confused?

I am the type of person who needs black or white, right choice or wrong choice. I am an over thinker, over analyzer, I have been researching this new information, I have made a pros and cons list, I have been consumed with "what if". I felt the most confident when my doctors told me, you WILL get chemo, you WILL get a mastectomy, you WILL get radiation, you WILL take this pill. Being told, this is your call, I can't seem to figure out what the right answer for me is. This isn't a simple question in my mind. Do I stay the course I have been on for 3.5 years (if it isn't broke why fix it) or do I switch to the new standard of care option (advances in medicine are made for a reason). The hardest thing for me is the unknown (which has and will continue to be the hardest part of this journey). My doctor did ask what my goals were, that is simple, to see Gabrielle and Cole grow up, to not ever have to go through that "journey"again, to grow old with Ryan, the same goal every wife/mother has. I was told, if my goal is to continue to be as aggressive as possible (I made that choice the day I was diagnosed) then surgery and switching pills is the best choice from a cancer stand point. Not the best choice from a now healthy 35 year old stand point though. I did tell myself and my doctors from day 1, that I wanted to do and take whatever was going to make my recurrence rate the lowest it could be, but at the same time, I don't want to decrease my quality of life, I don't want to feel like a 70 year old stuck in a 35 year olds body. Don't get me wrong, every day that goes by that cancer does not recur, my chances of it recurring drop. Each year that I go without recurring, I feel more and more confident this is never coming back. If I am 4 years out and doing fine, do I really want to "alter" myself yet again? I am not a big fan of change, I do best in situations where I can plan my life, where I can plan and be prepared for outcomes ( I am so "Type A" it scares me) I don't like the "well......." feeling.

I had such high hopes that when I got the port removed in April 2012, the big steps would be behind me. In the end I am confident I will do what is right for ME. I am confident I will make the decision that is best for my family. I just need to figure out what the hell that decision is and how I make it.

Losing someone is never easy.......

"Don't cry because its over, smile because it happened"- Dr Seuss.

It's funny the friends and relationships you form with other people who are in your boat. Since my diagnosis 3 years ago, I have made numerous friends through cancer. It has been one of the good things, meeting new people, creating new bonds and friendships with people who understand what your going through or went through. I have been fortunate to make several friends, a few have become very good friends. I never imagined I would have to say goodbye to one of them.

In one of my very first blog entries I wrote about a patient at the cancer center who I ran into in the chemo room. This was not just another patient (I don't mean that in any negative way), this patient was a favorite of mine. From the first day I met him, he was special, he was always happy, always positive. Even when he was feeling like crap from his chemo he always wanted to talk about my family, my life, he always told me "it is what it is" or "what am I gonna do, feel sorry for myself". He was the very first patient I told that I had cancer to, he was at the cancer center (by coincidence) the day of my first chemo. He saw me in the chemo room, stopped us and said "what the hell are you doing back here", when I told him he responded with "not you". He then put his arms around me gave me the biggest hug and said "you are going to beat this kid". He shook Ryan's hand and told him whatever we needed he was there for us. We ran into him a bunch of other times during my course of treatment and he always asked about me when he went in for his appointments. Once I returned to work,  he would come in, ask for me, give me a hug and tell me how great I looked (even when I had no hair and knew I looked horrible, he always told me I looked great). He sat down with me once I was in remission and he told me how pissed off he was that it happened to me. I told him cancer doesn't discriminate and he wanted to hear nothing of that, he wanted to know what was being done to make sure I stayed in remission, what needed to be done to help my mental state of mind, whatever I needed he reassured me it was going to be alright. He became more than a patient, he was my buddy, he had a piece of my heart.

Earlier this year, his cancer came back. I was devastated when he came to my desk that day. He sat down looked at me and said "well sweetheart its back, it doesn't look good", I remember telling him "no, you are going to fight and you are going to beat this again, you have to". Every time he came in for treatment from that day on he always came to my desk, called me "sweetheart" or "kid" and never wanted to talk about himself. He only wanted to know that I was fine, that I was still in remission, that I was taking care of myself. He downplayed every aspect of what he was going through. He truly was a selfless man. I mean, he would always bring in cakes or breakfast, but what I always remember is the hug I got after each appointment. He would hug me so tight that some times I was certain he may pop an implant. He came in for an appointment last month, he came to my desk sat down and said "its over kid", I told him no, no it wasn't. I wasn't listening to him, I didn't want to hear that. I told him he still had fight in him and they were going to figure something out. He came in last week for another appointment, at that appointment, it wasn't him. It took everything I had to be strong while he was there, I wanted to cry, I wanted to wrap my arms around him and tell him I was sorry, tell him it wasn't fair. Not him! I couldn't make eye contact with his wife, she was trying to be strong for him. Today, he went to Heaven. Today, he was set free from pain. Today, the world lost an incredible man. Today, a piece of my heart broke.

Mr. Brooks, you will never fully know how much you mean to me. How much encouragement you gave me. I am glad you are free from suffering, I am glad you will finally get to rest. It will be hard to not see you, I will miss your hugs, I will miss your humor. I will hold onto the memories that I have of you.

Sometimes I feel like I am falling apart

    Ok, I know that I officially "ended my blog" in the beginning of the year, however, it was such a good therapist for me and I want to keep this entire journey in one place. So here goes my thoughts and emotions on being 3 years cancer free.

   On September 16th I celebrated being in remission for 3 years. Yay (or so I thought yay). I have been looking forward to the 3 year mark since the day I was diagnosed. I remember being told, "the first 3 years are the most important", generally speaking my chances of a recurrence are the most high in those first 3 years. I told myself, make it to 3 years and the rest is going to be cake. I am pretty sure I set myself up for failure on that one. Don't get me wrong, I am beyond ecstatic to be cancer free 3 years later! I am starting to find it difficult again to not let the worry train come around and I am sick and tired of being on a pill that makes me not myself.

   The worry train; I remember my world falling completely apart on that day in March 3 years ago. I have struggled with intense fear of dying, fear of facing chemotherapy and surgeries, fear of what my life becomes after all this. I was lucky to have a really good therapist and support system (outside my blog) who helped me face those fears one at a time. I conquered everything and made it to the other side. I remember dealing with the after effects of everything was actually harder than physically dealing with everything (if that makes sense). As of lately, I have found myself falling back into that space. I honestly think it is because I am letting life happen again and quite frankly, it scares the shit out of me. Three years ago I stopped allowing myself to look into the future, I didn't want to think about beyond the day I was in. I didn't want anything in my life to change, I felt safe in my secluded little bubble. Well, guess what? Life goes on, you can't live inside your own little bubble. We moved into a new house a couple months ago (a house we have plans for), Gabrielle is following her ambitions on an amazing competition dance team, Cole is busy playing baseball, I am finishing my degree. I have let myself think about and get excited about what is to come. I can't wait to see how our plans with the house pan out, I can't wait to see Gabrielle on the "big stage" (as she calls it) competing with an awesome team, I can't wait to get my degree in my hands and see where that takes me, to see how Cole continues to grow at baseball. The other day I got hit, a huge bag full of bricks right in the stomach hit, hit with fear that letting myself get excited and plan for the future again is wrong. I find myself so excited for what is to come that I am making myself scared, does that make sense? I am afraid that allowing myself to be happy for the future and make plans is going to backfire. I understand the future is a scary thought for anyone, I understand no one is guaranteed another day, I am honestly at peace with whatever the outcome of my life is. However, I do get scared at times still. Yesterday I found a weird, not a lump, more like a ridge in my implant that hurts. Of course I went, in my mind, instantly to the day I found out. I sat on my bed and bawled my eyes out, Ryan kept telling me it is nothing. So much was done to my chest that things like scar tissue or something else is going to pop up, that I have foreign objects in my body and at times I will feel weird things. I am sure it is just a muscle or the implant but it still scares me. It re-affirmed that everything can change in an instant.

   Tamoxifen. Oh. How. I. Hate. Thee. This little white pill is the devil. I know it is serving me a great purpose and I will continue to take it until I am 42 (7 and a half more years). I don't know how I am going to get through those 7 and a half years. When I was first diagnosed, since my cancer was estrogen positive, I was told after chemo I could do Tamoxifen for 10 years or get my ovaries removed and do another pill option. Tamoxifen has the statistical information that makes me feel the safest. This little pill makes me feel like crap though. I have gained weight (like 30lbs), my emotions are all over the place, my moods are all over the place, I can't sleep at night, I get hot flashes, I bruise like I get beat up daily, my patience is very small, I am just sick and tired of taking it. I know things could be A LOT worse and I am very fortunate for the outcome I received, I just get angry (probably another side effect) that I don't feel like myself still.

   A part of me feels guilty for even writing this blog and complaining all most about such minimal things. Like I said, this my therapist and for me, I can write my thoughts better than I speak them.

My Poems

Poem #1

"My Story"

I was given a second chance, so my story could be told

I was diagnosed with cancer, at 31 years old.

When I went through chemo I lost all my hair

it was what I had to do, so I didn't care.

Two beautiful angels were my inspiration

when I'd feel like I couldn't do it, they were my motivation.

I kicked and I fought for 8 months long

now it's been 2 years since the cancers been gone.

I've been through hell and back, many tears have been shed

but now I am smiling and the hair is back on my head.

I will watch my kids as they grow and become adults

I will tell them stories they can't remember of the battles mommy fought.

I will watch my daughter get married and my son go to prom

I will be there when they need a hand, help guide them along.

I will tell them I love every single day

because cancer came so close to taking that away.

I treat each day as if it is my last and look to the future

but don't forget my past.

I have the scars to remind me, what could have been

had I not fought so hard, had I not gotten the win.

Now my eyes are wide open, all smiles for me

because I beat cancer and that is my story.

Poem #2

"I Wish I Could Run"

As I sit in his office,

alone, cold, and numb

I hear what he is saying,

but I wish I could run.

He says there's a beast growing deep inside my chest

he says he can save me or at least try his best,

I understand what must be done,

but why is this happening, I am only 31.

I stare out the window no feelings at all

my life flashes by, the room becomes small

I think of my family, my babies, my friends

all the things I did wrong, I need now to make a mends.

He says we'll fight this battle, he says it can be done

I hear the words he's saying, I wish that I could run.

I sit in a chair, poison going in my vein

I watch the bag empty, I try to hide my pain.

I look at the people sitting just like me

all walks of life, all ages I see.

The faces are pale, they look frightened and weak

Cancer doesn't care that you now feel like a freak.

Days now spent sick, bald, and sad

I look in the mirror, now I feel mad.

My babies don't understand, my husband stays strong

I search for the answer of what I did wrong.

One year later he tells me I won

I heard what he was saying and I am glad I didn't run.

Poem #3

"A Love So Simple"

A love so simple, a love so pure

from the moment I met you, I knew I needed more.

I love the way you smile, the way you look at me

I love your little voice, and the innocence you see.

I love your blond hair, and those big blue eyes

I love that no matter  what, we will always have ties.

I love you both the same in every single way

I love the way we cuddle at the end of every day.

I love my babies, Gabrielle and Cole

a love that comes from deep within my soul.

Closing a book and writing a new one...

"It's not about what it is, it's about what it can become" -Dr.Seuss. For me, this blog has served as a therapist. A place where I could let my thoughts, my emotions, my fears, my anger, flow without being judged. A place where I would document every detail no matter how graphic, every thought no matter how unimportant it seemed to others. A place where I could write a story. A story about heartache, fear, loneliness, uncertainty. A story about me. A story that I am happy to say finally has an ending. This year will be the 3 year mark for me! I honestly can't believe it has been 3 years since this journey began. I can say with complete honesty now, I was certain in 2011 it was the end for me. I had no idea how strong my body was, how strong my will to live was. I had no idea what a blessing this would turn out to be. I sat a few nights ago and re-read my entire blog (I had it printed out into books for Gabby and Cole). I cried from the first post to the last! Reading it now, being in a completely different state of mind, I actually scared myself a little. I can see the growth I have made over the years. I am happy with how my life has turned out. I have decided it is time to close this book, put it away on a shelf. I did what I set out to do in 2011. I survived. I faced every single fear I have ever had. I have stared death in the face and am no longer scared of it. I have had to let go of things, place my life in the hands of doctors and just believe that some day I would wake up from this nightmare. It was a long journey and like all journeys there were bumps in the road and set backs. There were times when I thought "I can't do this", times when I wanted to throw the towel in. There were many months were I never thought I would be me again. I never would be able to look at my chest and be ok with it. I would never be able to put cancer behind me and move forward. I thought this journey would last forever. I know now how lucky I am, how much worse it all could have been. I may not have the same chest I did 3 years ago, I may not have the same hair I used to. I may be 30 pounds heavier then when this started, but the things I am walking away with, I wouldn't trade them for the world. I have a deeper appreciation for life, I have a desire and drive to see and explore what this world (not if you need a plane to get there) has to offer. I understand how precious our time is. I learned to trust people, to trust myself. I learned to accept things as they happen because I have no control of them. I learned things will work themselves out. The biggest and best thing I am walking away from this journey with is the feeling that I have made a difference. I talk to A LOT of breast cancer patients a day and when they tell me they got a port because of me, or they agreed to chemo after talking to me, or I am the reason they made it through treatments, I can't describe that feeling. That second of feeling like I was the reason someone felt hope, that feeling made every second, every tear, every pain worth it. Closing this book was a tough desicion for me. I have enjoyed writing this (maybe I will start a blog about "Bad Puppy"), I have enjoyed going back and seeing what really happened. Even though this blog means a lot to me, making memories with my family and friends means more. Thank to you everyone who has taken time to read my posts, pass my blog along, leave comments, etc.. I am so happy to say that Amy Lynn's Journey is over and it had the best possible outcome. This book may be closing but the big book, the book of the rest of my life is just starting and I am going to write the best possible story...

2 year SURVIVOR!

It has been some time since I have updated my blog, with my 2 year cancer-free-iversary coming up, I thought now was a good time. I have no new health issues to report, which is a GREAT thing. I have basically been busy living life again. It really took a long time to return to "normal" or at least my version of it. I can honestly say though, I like this version of me a lot better. That girl I was leading up to that day in 2011 is long gone. Living life and appreciating everyday as though it could be your last, or your last "healthy" day is a great way to live. I enjoy things I previously did not, I do things I previously did not, and I try and be the best that I can be every day. I understand now that I am not perfect, that's ok. My life isn't perfect, that's ok. I don't have a bank account with an endless supply of money, I don't drive the fanciest cars, I don't live in the biggest house, I don't have all the material things in the world, but what I do have is so much better than anything a green bill or plastic card could give me. I have my health, I have my amazingly smart, beautiful, loving, compassionate, hilarious children, I have an incredible husband who stood by me every step of the way, who carried me when I was too weak to think I could get by, who allowed me the space and time to be sad, scared, angry, and a thousand other emotions I went through. I have a beautiful circle of friends. Friends that I know understand me, friends that don't let me get caught up in thoughts, friendships that I know will last a lifetime. I have parents and in-laws that have supported me and my family through it all, I have a beautiful life that I would not have had if it were not for going through cancer. I feel so grateful for having gone through this journey.

"Sometimes good things fall apart so better things can fall together". That is a quote I have on my desk at work. I have gone back to my old position and I feel really good about being there for other patients. All I want is for other people to see me, no matter what cancer they have, and think I can do this. I like feeling as though I am an inspiration, or hope, or even a person they can just let it all out with. Going back to my old position was scary at first, I really wasn't sure how I was going to handle the every day interaction. I could not be happier. Seeing the relief on people's faces, patients and family members, when they realize that I too have been there is priceless. I don't tell them I am a cancer survivor, I simply have a picture of Cole wearing a shirt that says "my mom is a breast cancer survivor". When people see that picture and then look at me, I just say "see this is 2 years later". I would not be able to help other people in the way I can now had I not walked the walk.

My crazy summer has been full of trips; the beach, Canada, Gettysburg, Dutch Wonderland, traveling for my husbands baseball games. Getting to do fun things like zip lining, getting a new puppy (Jake; a Chocolate Lab), the list goes on. These are things that I would have passed on in previous years. These are things that have made the best memories for me and my family. Again, these are memories I would not have had I not been forced to face my fears and realize that everything can be taken from you at any point. I think the best and biggest lesson I have learned is to forgive. Holding on to grudges and holding on to the past is only holding you down. People will come in and out of your life, people will make you angry, people will make you sad, being able to let go of all that is a wonderful feeling. Life is way too short.

"Smile like you've never cried. Fight like you've never lost. Live like you'll die tomorrow".

Remembering Vinnie

Yesterday, June 25th 2013, we had to say a very sad goodbye to our beloved Vinnie. Vinnie was many things to my family. He was a protector, he was a snuggle partner, he was a spare food cleaner upper, he was entertainment, he was loyal, and he was a friend. Vinnie has been through every major (and minor for that matter) event in my adult life. Some people may not understand a blog post dedicated to a dog, Vinnie was more than a dog, he was family.

Ryan and I moved into our first apartment together in January of 2001, in May we decided to get a puppy. We went to the Delaware Humane Society in search of the perfect friend for us. While we were looking at the dogs in the cages a tech was bringing a very scrawny brindle Pit Bull puppy out from being neutered. The puppy was groggy from the surgery and had a head that was much bigger than his body. We both instantly fell in love with that puppy. We were told that since he was a Pit Bull puppy he was being sent to a Pit Bull foster dog place in Atlantic City, NJ. We knew he was for us and we could not let that happen. We adopted Vinnie that day, of course we had to leave him there for a few days while they did background checks on us and what not. Everyday he was there, we were there. We would go and spend hours with him in the Humane Society until we could finally bring him home.

Vinnie was a VERY active puppy! We could not keep him in a cage (anyone that has a Pit Bull knows of the very LOUD and often annoying cry they do) so needless to say, he destroyed a lot of things. Vinnie was extremely loving from the day we got him. He never showed any signs of aggression, he never gave us a reason to think he was going to "lash out" on us. Actually, anytime we took Vinnie anywhere we always got compliments from people about how pretty he was and how calm his temperament was. The only thing Vinnie did not like very much was other male dogs (a dominance thing in his breed). Vinnie loved nothing more than Gabrielle and Cole.

From the day we brought Gabby home, he was right by her side. If she was in her swing he was under her swing, if she was in the pack n play he was right next to it. Once Cole came along we started putting Gabby in her own room, Vinnie slept every night with Gabby from the time she was 11 months old until his last night with us. Vinnie was caring, that may sound weird because he is a dog, but I remember perfectly him being by my side every day I was sick. After chemo treatments I would come home and lay on my couch for literally a week, he was there on the couch with me. When I would slowly venture into the bathroom for a shower, he would wait outside the door. When I would sit and cry because cancer happened to me, Vinnie would be there licking my face. Even on the last night he was alive, I was sitting on the floor in front of my bed (he was laying with Gabby) and I was petting his face telling him he was a great dog and I loved him. I, of course, was crying and Vinnie, of course, was licking my face. Vinnie would stay by the side of whoever was sick, when the kids had a fever he was right there, when it would storm he would want to cuddle. Vinnie was and always will be a huge part of our family.

Vinnie was a Staffordshire Bull Terrior, he was a smaller breed Pit. Before getting him I was dead against a dog in the Pit Bull family, I am so glad that Ryan changed my mind and we got him. Vinnie was a perfect example that Pits are taught to be aggressive, not born aggressive. He was found on the streets in Wilmington when he was 3 months old, we got him at 3 months and raised him in a loving family oriented house. Because of that, Vinnie was loving and was family focused. He NEVER showed signs of aggression, he did however protect our family to the fullest. No one that Vinnie did not know was able to come in our house, especially after Gabby and Cole were born. He would do whatever he needed  in order to protect my babies. For that, I am grateful. I never was worried about a Pit Bull sleeping in a bed with my kids, I was never worried about leaving him alone in a room with Gabby and Cole when they were babies. He loved them very much and he showed it everyday he had with them. Vinnie was incredible and I will miss him deeply.

Vinnie,

I can not explain the sadness that fills my days now. I wish that I could still sit on the couch and look over and see you at the other end. I know keeping you here was selfish and I am sorry you lived your last few weeks in pain. We were not ready to say goodbye to you. Saying goodbye to you was harder than I could have imagined. You were always there for us, no matter how frustrated we got with you because you chewed up something or because in your last days you had an accident in the house. You never held a grudge. Vinnie, you always made me feel safe and loved. You stayed by my side when I needed a companion the most, you protected and loved my babies more than I could have asked for. You were the bestest friend to Gabby, but she will be ok. She will remember you and smile because of the good times you shared, she will have many pictures to remind her of how amazing her first doggie was.

As hard as it was letting you go yesterday, I know in my heart you are better. Our tears have stopped and our hearts will mend. You could not have loved my family more and you will forever hold a special place in the hearts of 4 people who love you very much.

Rest In Peace Vinnie-Voo!! You are deeply loved and very missed!

How Time Flies When You Are LIVING Life!

I can't believe that in 10 days it will be 2 years since I was diagnosed with cancer. 2 years! I honestly didn't think I would see 2 years later. I am so proud of how far I have made it, I am proud of the things that I accomplished and continue to accomplish each day. As everyday goes by I start to feel more and more like Amy again. As each day passes I reflect on what my life has now become, on what I have learned, on who I am.

2 years ago I was so afraid of just about everything (no joke). I was afraid to get in a car and drive by myself to places out of my comfort zone, I was afraid to take trips away from my house, I was fearful of taking any form of medication, I was terrified of death. My fear of death was so intense that it consumed a lot of my time and mind. 2 years ago, as Dr. Pahnke told me I had cancer, these fears suddenly seemed silly to me. They used to be valid in my mind but in an instant I wished I was able to go back and take all those trips I turned down, I wished I could get in my car and drive a thousand miles away from the Helen F Graham Cancer Center, I wished that I was anywhere in this world besides sitting in his office. As I have mentioned in previous blogs, once he said "cancer" everything just sort of shut off in my mind, everything except my fear of death. In my mind I was going to die. I was going to never have the chance to do all the things that I wanted, I was not going to be able to see my babies grow up. In a instant I had to come to terms with my fear of death. I never realized how freeing it would be to let this fear go. Of course I still get scared (perfect example; I have had a sinus headache for 2 days now, if I said the thought of metastatic brain cancer doesn't creep into my mind I would be lying) the difference now though is I accept it. I know that I can not control anything that happens to me. I know that worrying about it won't change anything. I know that if I am supposed to die, nothing can stop it. Being ok with that makes me feel better.

2 years ago people started telling me how brave I was, how strong I am, how much of a fighter I am. Really, I am not any of these things. I was not brave during any of this, I cried everyday (sometimes more than once) from March of 2011 until probably January of 2012. I needed Ryan to tell me everyday that I was going to be ok, that I wasn't going to die. There were many times we sat together in our room and I sobbed telling him I could not do this, I was not as strong as everyone keeps saying I am. When I think of a person who is strong, I picture someone who gets told they have cancer and they instantly go into "I got this mode", that was not me. I am thankful to work for a place that allowed me to be home the entire time I was receiving chemo, I am thankful for Ryan taking care of, actually, babying me for the months that I was getting chemo. I literally did nothing. Ryan worked all day and came home at night to take care of the kids and me, he made dinner every night, bathed the kids, got them ready for bed, did all the cleaning, all the shopping, all he told me to do was get better. I am very fortunate for that, but none of that makes me strong though. Fighter, in the form of arguing, yes I am a fighter, in any other sense, not really. I did what I had to do, I did what the doctors told me would make me better. I sat in a chair for 5 hours every 3 weeks (high as a kite) and got pumped full of poison that fought the cancer, not me. The one thing I am though is a survivor. I survived chemo, I survived surgery, I survived being home for 6 months with a  3 and 4 year old ;). I follow a few different breast cancer blogs, one of them was a breast cancer patient (who had metastatic cancer (spread to other parts of her body) cancer) who in her last blog post, said her goodbyes, asked her followers and family to let her go, thanked everyone for everything they did and simply ended her blog with "Please, don't forget about me". She was brave, she was strong, she was a fighter. The patients at the cancer center that have been dealing with cancer for years, that have been getting chemo for so long it is a normal part of their lives, people that are living with the cancer still in their bodies because it can't be removed, people that awake in the morning to face their destiny of a terminal disease, they deserve these titles, not me. I am just the girl who, unfortunately, had to get chemo, had to get radiation, had to get a couple surgeries.

2 years ago, I never thought I would see the other side of cancer treatment. I am back in school, changed my major to "Bachelor of Science in Health Services Administration", I take my kids to places by myself all the time, I go out of my comfort zone all the time, I actually plan our family vacations now, I look at my kids and can honestly say that Ryan and I are doing one heck of a job raising them, I am so proud of everything they are. I have developed friendships with people now that have depth, that are so strong nothing will ever be able to break them (you know who you are). 2 years ago I thought this is it, now 2 years later I am saying this is only the beginning!

Different day same story...

I am not afraid of tomorrow, for I have seen yesterday and I love today.- William Allen White

 

I have sat and gone back and forth on whether or not to write this blog post. I feel like I should because this is my "diary" basically. Sometimes when I am having a difficult time I go back and re-read what 2011 was like, what I have conquered, and I try and remember that I got through the worst part of my life to date. Also, if you are reading this please remember that I have more good days then bad. I just write about the hard times so I can go back and help myself later if need be.

 

I saw my therapist again last week to go over my anger issues. I have been finding it very hard to control my temper around people that directly or indirectly do something to Gabrielle or Cole. Without going into details and re-living all the situations I will name the most recent, I have snapped on a lady in Target for hitting Gabby with her cart, did she mean to? I would hope not but when she hit Gabby after I told her to watch where she was going, I lost it. In a museum a lady moved Gabby's hand and cup from in front of the ice machine, I, again, lost it. I go from 0 to 160 in less then a second. I get so angry that there is nothing in that moment that anyone can say that will calm me down. I talked to my therapist about this and told him that I really think I have completely lost my mind. I have always had a temper but lately it is over the top. I was expecting him to say "Amy, you are insane", but he didn't. He told me that I need to stop being hard on myself. He said to think back to when I first started seeing him after I was diagnosed, what was my biggest fear? What was the one thing that I sat in his office and cried and cried over? Leaving Gabrielle and Cole. Dying when my kids need me the most, not knowing what they turn out to be in life, and thinking that it was possible that eventually someone else could replace me. These are things that would destroy any person. For an entire year Gabrielle and Cole took care of me, that was not fair. For an entire year I had to sit and think about the what ifs. Now, that I am in remission, my need, my desire to protect them is now over the top. Is that wrong? No. I still to this day, it will be 2 years on March 24th, I am scared out of my mind that I am not going to be here for Gabrielle and Cole, nothing, except more time, can make this fear go away. Until that fear does, anyone or anything that I feel is threatening to my children will get the wrath of Amy. It's not just strangers with my kids, I get angry and say things I really don't mean but I know will hurt someone. As horrible as this sounds, I want someone else to feel my pain. I know it is wrong but my way of justifying it is, me having cancer at 31 was wrong. I sat in my therapists little office and fought back tears. I have been in remission for 17 months, I should be over all this by now. I should be healed.

 

In some aspects, I have healed. Physically, yes my body has healed from chemo, surgery, and radiation. I don't worry that every headache is cancer, I don't get scared that every ache is bone cancer, I actually live my life now. I let nothing stop me from doing what I want, what my kids want. Prior to cancer I didn't do anything without Ryan, I do a lot without him. We travel quite a bit now. Like the quote at the top says, I have seen yesterday, I don't fear tomorrow. The thing that I can't get past is the emotional healing. I can put on the smile and say "oh, I am great" but really, honestly, deep down, cancer ruined me. It turned me into this person who can't, who won't accept what happened to her. I can wake up in the morning and be in a great mood, the second the shirt comes off to get in the shower, I am broken. I absolutely HATE my chest. I have never had small boobs in my life, it is a weird feeling to put a shirt on and be disgusted. Not because I eat too much and have a fat stomach ( I am ok with that) but because this chest isn't mine. I never had the final step to reconstruction done because I simply don't want to be cut on anymore. So I don't feel complete. I don't regret my surgery choices at all, given the chance to do it again, I would choose bilateral mastectomy every time. It just comes with a difficult healing process.

 

Yesterday, I had an almost complete breakdown. I got mad at Ryan over something that wasn't a big deal which resulted in a fight. A fight that when Ryan asked me what was really going on, I lost it. I told him it's not fair this happened, it's not fair I can't move on, it's not fair that for no reason at 31 my life was threatened. It's not fair that my babies had to learn about death, sickness, and heartache at such a young age. It's not fair that I work in a cancer center, it is not supposed to happen to the people that try and help other cancer patients get through it. This next part I don't mean to offend anyone with my words, I am sick and tired of people telling me to pray about it, people telling me it is in Gods hands and trust in Him. Trust in Him, this should never of happened! What did I do? What did my kids do? What did my husband do? I lost A LOT in 2011/2012, physically, mentally, materialistically, I lost things and people that I will never get back.

 

It is great to live your life like there is no tomorrow, I live my life like tomorrow the cancer is going to come back. I want to go to bed at night knowing that I did everything that day that I wanted. I give my kids whatever they want (sure some people will think that is wrong but I am not fully confident that I am going to be here when they grow up). I had stage 3 cancer at 31, I don't feel like I am wrong. Back to my therapist, he ended our session with saying to me "Amy, I have gotten to really know you in the past two years, I have seen you through the worst parts and the best parts. I wish there was a one way mirror in here and you could see other cancer patients. You are completely normal in an abnormal situation. To be 31, with little kids, and to go through what you did nothing you are telling me is wrong or concerning." He then asked if I wanted the truth about healing, of course I did. I am a need to know person. He said with my situation, what I have been through medically and emotionally, 3 to 5 years to be mentally healed. 3 to 5. I am at 2 years. I know I will be ok, I just need to stop trying to force the healing and let it happen.

 

It never ends.....

It has almost been 2 years since I was diagnosed with cancer, it has been 18 months since I completed chemo, and 16 months since I was declared cancer free. I really thought that at this point life would be back to normal. Well, as they say after you "survive" cancer, "new normal". Let me tell you, "new normal" is pretty annoying. Once you get a grip on your crazy emotions and fear of recurrence, there is always something there to pop up and say "oh no, you are not a normal 33 year old anymore". I have been dealing with the WORST memory loss, I can't concentrate on anything to save my life, and I feel like an 80 year old because I repeat myself over and over. I figured as time went on the "chemo brain" would get better, wrong. It seems to be getting worse. Now throw in the fact that I wake up with unexplained bruises on me, I am starting to think Ryan is beating me in my sleep. How am I supposed to, move forward with my new normal life?

Chemo brain: This is copied from the Mayo Clinic website: Signs and symptoms of chemo brain may include:

• Being unusually disorganized
• Confusion
• Difficulty concentrating
• Difficulty finding the right word
• Difficulty learning new skills
• Difficulty multitasking
• Fatigue
• Feeling of mental fogginess
• Short attention span
• Short-term memory problems
• Taking longer than usual to complete routine tasks
• Trouble with verbal memory, such as remembering a conversation
• Trouble with visual memory, such as recalling an image or list of words

Signs and symptoms of cognitive or memory problems vary from person to person and are typically temporary, often subsiding within two years of completion of cancer treatment.

Every single one of these is me! This is the most frustrating side effect for me. I used to have the BEST memory, like Rain Man type memory and now I drive to a store and walk in not having a clue why I went there. When I carry a conversation with people I find myself fumbling over my words because I can't seem to put them together properly. The absolute worst part of this is I feel like I am missing out on so much with my kids. It may sound silly or even unbelievable to some but I can do something and the very next day not remember. Just last weekend Ryan and I went to Atlantic City to attend a private acoustic concert by Rob Thomas. I LOVE Rob Thomas, I was so excited for this concert. We went, he was amazing (or at least I think he was), was in the casino after the concert and was like "oh, wait, I saw Rob Thomas". The next day it felt like I never even went to the concert. I have watched YouTube videos from the concert and it felt like I was watching it for the first time. I also am back in school finishing my Bachelors degree, this is proving to be beyond difficult. I used to be able to read something, listen to the lecture and write the paper. Now, it takes me hours to read a chapter, I have to read and re-read , then re-read again (don't know if re-read is even a word). I am so frustrated with this. It says within 2 years this should subside, that will be this July. I hope so because I feel lost.

Bruising. I have no clue what is going on with my legs. I have had blood work done and so far everything is coming back normal. I did just have more testing done today (Lauren Ciliberti thank you for being my official hand holder, even though you did cause more anxiety today :). Yesterday they checked my CBC (complete blood count) all that was normal, so today they checked my PT/INR (clotting factors), checked me for Von Willebrand Disease (more blood clotting issues) and Factor VIII (even more blood clotting issues). I just don't understand these bruises, maybe I am being attacked by aliens at night (if only I believed in aliens). I will wake up in the morning, go to get in the shower and notice big, deep deep purple bruises on my legs. I guess I just have to accept the "new normal". Ugh!

We are almost one entire month into 2013 and I am over this year! We have spent the entire month battling the flu, stomach bugs, ear infections, memory loss, bruising, and I am sure more things I am forgetting. How many more days till 2014?

The truth about the road to recovery

Today I had an appointment with the therapist here at the cancer center. I had seen him while I was going through treatments because lets be honest, I was a mess. He helped me tremendously. He helped me deal with the reality of what I was facing for myself and my kids. The last time I saw him was right before surgery in September of last year. I have been doing very well, or so I thought, since then so there was no need to see him. On Wednesday I had a complete breakdown in my oncologists office, kind of awkward since I work with him too. I told him, ok my friend Maria told him, I was not ok. I was angry, I was telling everyone that I was fine. I was putting on a smile and being the positive person I am supposed to be. He suggested that I go and speak with the therapist again, I was dealing with things that no one could understand and I didn't want people to judge me or think I was ungrateful for this second chance I was given. So, I have learned how to keep most things to myself and constantly say I am fine. It eventually became too much to keep in and it all came flooding out.

I can say that today's appointment was probably one of the best appointments I have had. The things that he was saying to me actually made sense. For the first time I felt like someone truly understood what was going on inside my mind, I felt like someone was being honest and not just sugar coating everything. He asked me about my anger, I told him I was angry. I was angry this happened, I was angry Gabrielle was having a hard time, I was angry that no one understood, and I was angry that I haven't emotionally/mentally "healed" yet. He asked me how I was while at work, I told him oddly enough I am fine. He repeated himself and told me to now answer him honestly. Well, he asked for it. I was not ok at work, actually in the one place where everyone should understand, I feel like no one understands. I feel like for the 6 hours a day that I am there I have to be happy, I have to be positive, I have to say life is great. I feel like I have to do these things for the other cancer patients, I feel like I have to be the poster child for cancer survivors around my co-workers,when in all honesty I want to tell them how much this sucks, how hard it is to move on. He moved forward in his chair, looked right at me and said "I am about to blow your mind with something", not gonna lie I was a little nervous. He said all the posters, pamphlets, motivational speakers, everything that society has put on cancer survivors is complete bullshit. You are expected to be positive at all times, you are expected to always say how grateful you are, you are expected to end chemo/surgery/radiation and instantly transition back into "normal" life again, you are expected to be everything but honest. He was right.

Once you are diagnosed with cancer everyone tells you the same thing. You are strong. You can do this. It's no fun but it's doable. Time will fly by. All these things are truthful but what people leave out is how the road to recovery is more difficult then actually getting the chemo, then actually having surgery. I can't explain it fully unless you have been there. When you are going through chemotherapy you sit in a chair with an IV hooked up to you while toxins are entering your body, those toxins are doing a service to you, no matter how much they suck. When you are getting radiation, again it is doing something positive for you in the long run, even though you get radiation burns. Same thing goes for surgery, its serving a purpose. Once its all over and in my case you had a bilateral mastectomy looking at yourself is a reminder everyday, that will never get easier. I can't not go a day without thinking about it because I have to take my shirt off. Sure I have implants so no one would ever know but I can see the twelve scars. I live everyday in fear that it will come back. Any cancer patient who says they don't just doesn't want to admit to it. I was told that I have an 83% chance of living ten years disease free. Statistically looking at that, I have pretty good odds. The thing is I see the 17% percent. Why would I be in the 83% when I was in the minority to begin with. It was rare for this to happen to me but it did. So in my mind the odds are already stacked against me. Today my therapist told me that I will not ever be that other person again, I will always be the cancer patient and that is not a bad thing. It is the way society has placed a certain image that cancer survivors are supposed to live by. And he was right. I have spoken to other breast cancer patients, I have been there for others while they got chemo, I have tried to tell them all is going to be ok, and it turns out I was just doing to them what everyone has done to me.

Truth be told. This sucks! The road to recovery IS harder then the actual fight. You can't just put it behind you and move on because this will be a part of you forever (how you choose to deal is a personal decision for everyone). Living every day like its the last day you are going to be in remission is a great way to live, it shouldn't have happened in the first place but it did, it's ok to NEVER accept that it was you. It is ok to cry for no reason or cry and not have to make up an excuse. It is ok to have days were you just want to talk about what happened to you, it is ok to accept help and love from others no matter how many months/years you are out for treatment. Most importantly it is ok to not feel like you have it all under control at all times because like my therapist told me today, I dare one person to look me in the eye and tell me I am weak. I dare one person to tell me I don't have the right to still have these feelings. I dare one person to judge me. I am the one that sat in a chair getting chemo, I am the one that had both breasts removed, I am the one who has been radiated. I am the one who literally went to hell and back. I am the one who decides when I am healed, not society.

My feelings

This time of year, October-January, has always been my favorite. I love Halloween, my kids birthdays, Thanksgiving, picking out our Christmas tree, Christmas shopping, Christmas, saying goodbye to another year lived and welcoming a new year (with my birthday). For some reason I am finding this time of year to be difficult this year. Last year I had so much to be thankful for, I made it through 4 months of chemotherapy, major surgery, a hospital stay, and radiation. I was thankful to be cancer free and to be alive and healthy. I am still thankful for those things, I am just finding it very very hard to be motivated to get anything done, I almost feel like I need time to slow down. I need time to wrap my head around certain aspects of my life, I need time to think about the things that I am fearing the most right now.

Being healthy. Am I a picture of health? No. Am I still cancer free? I hope so. The thing is, I haven't been feeling right lately but out of complete fear of what I went through, fearing hearing the word "recurrence", and of course fearing not being here to see Gabby and Cole grow up are something I can't deal with. I have literally been living off Xanax for the past month. I know I should talk to my oncologist about certain things but I can't. After what we just went through (and are still going through) with Gabby, I wouldn't be able to handle if something shows up on a scan. I don't want to think about the possibility of something coming back but when you wake up with headaches, feel tired all the time, can't remember anything to save your life, and feel short of breath for no reason it scares the hell out of you. I have gotten pretty good at keeping all my fears  and "symptoms" to myself. These are things that I haven't even told Ryan about. I think I do this because I honestly don't know what I would do. I can't think about 2011 without having a complete breakdown. I can't think about ever sitting in that chemo chair again, I don't know how I did it the first time around. We also just went to a funeral for Ryan's uncle, who passed away from cancer, that was harder then I thought. Sitting there in the church and seeing his coffin and hearing what the preacher was saying, in my mind I was picturing it being me. Picturing my kids sitting there saying goodbye, imaging Ryan's life with someone else. I know that is twisted. In my heart I feel like I am ok ( at least I pray every night that I am).

Family. I know family business is personal and should be kept in the family. This is my blog and I can write my feelings about anything. This holiday season, I know it just started, is going to be a difficult one. I don't talk to my sister anymore, I don't see my nephew or niece anymore. I honestly never thought that when my journey with cancer was over that I would have lost more then just my hair, boobs, and security of a future. I never thought that I would be "picking up the pieces" of my life and moving on without the one person who was always there. I never thought this is how it was going to be. When it comes to actual family I only have the 3 people that live in my house and my parents. Ryan, my kids, and my parents are the only family that I really have. I know how important family is, I know that Ryan and I would not have survived 2011 and most of 2012, financially, without my parents. Thank you for everything you have done and continue to do.

I know today is Thanksgiving and we are all supposed to be happy and enjoying the day with our families.  I am happy, I am enjoying the day with my kids and husband (when he gets home from football of course), I just needed to get those things off my chest.