Tuesday, September 27, 2016

Second Opinion

On Friday I had an appointment with a Breast Surgeon at Robert Wood Johnson for a second opinion. Dr. E was great! He was thorough, explained things well and was very clear about his thoughts and opinions. I felt comfortable with his diagnosis which did not differ much from my current surgeon. I have stage III breast cancer. To tell you the truth I have a copy of all my testing results and choose not to look at them, some ways it is easier to let the doctor tell me. But hey I lucked out I still have the most treatable and curable kind of breast cancer. It's the little things.

Dr. E agrees with my oncologists treatment plan. His only change to the plan would be to do surgery before I start the chemo treatment followed by radiation. I agree with getting the surgery over with, plus that would put me to the end of December or early January before chemo. Of course there is one catch! Because of the advanced stages of the cancer, before we move forward I need to have a PET scan to determine weather the cancer has metastasized in other areas in my body. If they find cancer in other areas it is no longer curable, only treatable to stop it from spreading. Up to this point I held it completely together but then I lost it. There is a possibility that it is not curable.

In 23 days I went from an early diagnosis to stage III. I can't say I am surprised by the diagnosis based on the size of the mass. But I did not expect in 23 days to go from completely curable to possibly only treatable. It took me 3 days to digest this. It took me 3 days to compose myself enough to write this post. It took me 3 days to share this news. What goes through your head when your told you may no longer be curable? It fucking sucks!! It's the worst of the worst! I want to live! I want to live along happy life with David! I want to see my children grow up! I can barely look at my children with out welling up. I can't hold my kids close enough!

On Monday I will go for the PET scan. Until then I will move through life like normal. I will go to soccer games, dance practice, make lunches, help my kids with homework and plan my kids birthday parties. I will do my best to stay strong for myself, for David and most of all for Jack and Ava. I am going to hope, I am going to believe and I am going to pray it did not spread. Please God let this be treatable! Xo

Where there is hope, 
There is faith. 
Where there 
is FAITH,
Miracles happen.

Friday, September 23, 2016

Crazy Emotions

The last 22 days have been a whirlwind of emotion. OVERWHELMING! to say the least. How do you tell your family, the people you love that you have cancer? How do you tell your friends? Trust me it's not easy. I have to say other then calling my parents I told everyone else via text or messages. At first I felt like guilty, I took the easy way out but here's the thing talking about it, repeating yourself, answering question after question is exhausting. Mentally draining. Then you are hit with the awkwardness of "I don't know what to say." Guess what!? There is nothing you can say. There is nothing you can do. I don.t know what I need. No you can't make it better. No you can't understand how I'm feeling because everyone feels or acts differently when faced with this challenge. Bottom line, there is no right or wrong in this situation. Just be you. Say it sucks! Because it does. Say your thinking of me, praying for me, you love me. Cry with me, just be there for me. 

I am so amazingly blessed to have the support system I have, I appreciate every call, text, message, token of love & support I receive. I may not always reply right away but I truly do appreciate it. People always ask how I am doing, my best answer is it depends in the day, the hour, the moment. It depends who's around. It depends on what news I got that day. It depends on what doctor I saw. It's a roller coaster that never stops.

I have moments that I sob uncontrollably. I have moments that I just laugh, how much can one family go through, Seriously?1? I have moments I'm neutral. I have moments I feel nothing. I have moments that I think I can't do this. I don't want to be sick, loose my hair, not be able to do all things that I do with my children. I just want to not do anything, live out my time and be done. Then I think about my children, I can't do that to them. I think about David that I love with my whole heart, who is my rock and is there for the good and the bad. That has unconditionally stood by my side. I think about my huge family and my awesome friends. I know my only decision is to fight. To fight hard! To give it all I got! To watch my kids grow up. To see Jack reach his dreams of being a professional soccer player and commentator. To watch Ava grace the stage Irish dancing, dance after dance. To live a long life with David by my side. To be with my family, watch everyone grow old and live a peaceful life. I will do what it takes to get to the other side of this long exhausting road. Continue to pray for my strength through this journey and for my children to make it out okay on the other side! XO 










Thursday, September 22, 2016

One Day At A Time

Just when I thought things couldn't get worse now I had to retell my kids. Again I was honest with them. There was a change of plans. I would not be having the originally planned surgery but only a test on Monday. The cancer they found was a little worse then they thought. It's still treatable. It's still curable but it's going to be much harder to get there. Mommy is going to be much sicker. I will loose my hair. It's going to be longer then planned. Both took it well and reacted in different ways. Ava was very matter of fact stating "Is it like how my surgery fixed me. Will it take as long as it took me to get better?" Yes and yes. Jack was concerned. He tells me every chance he gets to tell me he loves me and wishes I didn't have breast cancer. Me too Jack, me too. It's not going to be easy, it's going to be long but in the end it will be okay. I think their biggest concern is the hair loss. Ava told me "I don't want a bald mom." It's not my choice either but it's going to happen.

Monday morning I had my lymph nodes biopsied. Little did I know having a biopsy on your lymph nodes actually is a removal of any cancerous or suspicious nodes. I'm not sure what I thought was going to happen but I was not exactly expecting a surgery. First thing they did upon arrival is take me to radiology and inject me with radioactive dye. After waiting an hour and a half they took pictures to see which lymph nodes reacted or looked "hot." In I went to surgery, an hour later I was done and out I came with a drain attached. Nine lymph nodes were taken out, one was definitely cancerous, everything was sent for testing. Home I went for another waiting game. 

I have had a lot of time in my own head. Knowing what I face helped me come to a tough but at the same time easy decision. I want a double mastectomy. I am fighting this once and only once. I will not go through this again. I will not put my children, my husband, my family or my friends through this again, On Tuesday I had my first visit to the oncologist. She went over my treatment plan, There was a lot of explanations and a a lot of big terms. To put it simply I would be receiving chemo once every other week for 8 weeks. Then once a week for 12 weeks. 5 months of chemotherapy, 5 months of hell! Once I rebuilt my strength I would have surgery then radiation. Bottom line is it is going to be long, I'm going to be very sick and it's going to suck! 

How do I process this? How will I do this? I don't want to do this! I don't want to be sick! I don't want to loose my hair! There is nothing anyone can say or do to make this better. It's life changing. It's scary. Please give me the strength to move forward. I don't think I have ever cried so hard in my life. Sometimes the tears come out of no where. Sometimes the emotions are so much. I have the most amazing support system but it doesn't change only I can fight this. I have to go through this.

This brings me to today. First thing this morning I went to have a pap smear for precaution. All looks good but again waiting. It was recommend by both the oncologist and gynecologist to have the BRCA test. (I'll add it to my list of things to do.) Next stop was the surgeon's to have my drain removed and hear the results of the biopsy. A total of 11 lymph nodes were removed and 4 were cancerous. Thankfully they are all out and radiation after surgery is a definite. Tomorrow I am going for a second opinion at Robert Wood Johnson with a breast surgeon. Again a mix of emotions. I feel like after this consult I can make my decisions and move forward with treatment. It's a big day, big decisions. My fight will officially begin! Please continue to pray for me and my family! The power of prayer is amazing!! Night!!


And It Just Keeps On Getting Worse

Once my kids knew about my diagnoses I made the choice to make it public and post about it on Facebook. I am a very open person and believe when I go through a difficult time if I can help just one person by sharing my experience then it is all worth it.  I did not share to receive pity or for people to feel sorry for me or even for attention. I shared my diagnosis for a more selfless reason, my number one priority...my children. I live in my home town. I am very active in our PTO and our soccer club. I do not want people to gossip, wonder or be miss informed. I want them to hear it from me not the telephone game. Both David and I are completely open and honest with both Jack and Ava. There is no sugar coating in our house, we tell them the facts in terms they understand. They are going through this as much as I am even if they don't know it yet.

I set a date to have the lumpectomy on Monday, September 20th. I wanted to get it over with as soon as possible. On Friday, September 16th I went for pre-surgery blood work and the MRI. So here's the thing about not having insurance, EVERY DAY IS A NEW DAY! It is a daunting task to check in and re-explain your situation. I don't have insurance. Yes I know I have to pay everything. No I can not pay it all today. I am working with the financial adviser to make arrangements. I am working on getting insurance.  Yes I am self pay.No I do not qualify for Medicaid. No I can't pay it all now but I will still be having this test today. Unfortunately the financial adviser's elevator doesn't go all the way up and is not much help. Bring on the water works! Do these people realize how overwhelming a cancer diagnosis is! Do they realize not having insurance is not my first choice! Do they realize I need to have these tests to move forward! I need these tests to get better! Why in this day and age is this information not entered in my file so whoever puts in my name sees the answer to all the idiotic questions I already answered!! I can not for the life of me can not figure it out!

After the tears and discussion of me not having insurance my tests are done. Now the waiting begins. Yes my diagnosis sucks but I was doing my best to keep life normal, act normal and stay positive. My plan was to continue to work as long as I can. I needed to keep busy and my mind off the pending results. Wednesday I went to work as normal and while my clients color was processing I received the call from my surgeon. The MRI came back and unfortunately the mass was larger then then they originally thought and I have several enlarged lymph nodes. I was going to need chemotherapy to shrink the mass before they can remove it and after I would need a partial or possibly full mastectomy followed by radiation, Thankfully I was doing my friends hair because I could not breathe, speak or think. I had to go home. I had to process it all. The plan had changed drastically. My worst fears had come true. I don't know if I can do it. I was scared. I could not believe what I heard. I thank God everyday for the amazing people in my life. After calling David to tell him the news I sent one text telling a friend "I need you." It brought two of dearest friends to help me through one of the worst afternoons of my life.

I am forever grateful for Meg and Becky for coming to my rescue that day. For calling anyone and everyone they could to help me make a plan moving forward. For gathering information. For starting the process of getting insurance. For holding it together even though I know they wanted to cry as hard as I was. For sparing Jack from finding his mom hysterically crying on the coach when he got home from school. For being them. For being honest. For giving me tough love. Just being there. My world stopped for a moment. How could this be happening?? How am I going to tell my kids!!





Results

After a long weekend of pretending everything was okay and trying to be brave for my kids I received a call from my primary care doctor the following Wednesday. My results were concerning, I needed a surgeon immediately and an oncologists. Talk about the wind being knocked out of me. Here I was home with my kids, up in my bedroom and a doctor just told me without actually telling me I have cancer. That day was a haze. I couldn't think, I couldn't feel, I could barely process what I was just told. What?! I'm sick! Very sick! This is not happening! I had to call David at work and tell him my results were not good. Do you know how hard it is to tell your husband that you have cancer? The person who you have created a life with, your best friend, the father of your children, your world... you are sick...you have that worst case scenario. You have the thing you have been denying and kept saying it's going to be fine. It's the worst thing I have had to do except telling my children. After telling him I had to continue my day, go to the soccer field, shield my kids for as long as I could.

The next day I had my appointment with the surgeon. Unfortunately David had to work but my life long friend Meg came with me. My surgeon got the lucky task of telling me I have breast cancer. There it is! The most common, treatable and curable form of breast cancer. I would have a lumpectomy and receive radiation and I would be fine. Very clean cut..bad news but not the worst of the worst. We would schedule the surgery for Monday the 19th and the mean time I would need blood work and an MRI to get a closer look at my left breast and a better measurement of things on my right. The best way to describe how I feel is overwhelmed! I just received life changing news. So much information to digest. I can't make a decision, I can't answer questions. I am frozen in this awful nightmare. My kids!! I have to tell my kids.

That weekend we sat the kids down and told them the news. They took it better then I thought. We put as positive of a spin on it as we could. They would be fine. I would be fine. It won't be easy but we'll make it through. My kids are amazingly strong. I love them with all my heart! I will do this for my family! I will survive for my family!

Where It Began

Last fall I actually found the lump on my breast. I assumed it was a cyst because I have had them in the past. Honestly it was months before I gave it a second thought. Come winter my gut told me it was something more but life gets busy and I had other things to do. Like most moms I put myself last, blew it off, ignored it and pretended it wasn't there. Fast forward to July, the lump had changed and wasn't getting smaller through out the month and was occasionally painful. I had just come back from Florida with Ava and I was having dizzy spells. I finally made a doctors appointment. The dizzy spells turned out to be from my allergies but while I was there I mentioned the lump. The doctor gave me a script for an ultrasound and a mammogram (which was way over due being that I was going to be 42 in a few months.) But of course it stopped hurting, I got busy and I blew it off.

I found the lump would hurt from time to time, mostly after I had a busy day at work. (I'm a hairstylist for those who don't know.) I am right handed, the lump is on my right breast and the motion of working would irritate it. The morning of September 1st I woke up in severe pain. Pain that caused tears, I have a very high pain tolerance so I knew something was wrong. I finally gave in and scheduled an ultra sound. I was able to get in that same day. After the ultra sound I received a text from a dear friend Katy asking me to please come back for a mammogram, I knew in my heart and my gut right there and then I had breast cancer. I had been in denial for months but I couldn't ignore it anymore.

Here's the thing, our healthcare system is broken. Both David and I were hairstylist for 18 years, both hard workers but the careers we had required us to purchase private health insurance. Health insurance is expensive, we are not poor nor rich but this was not something we could afford. Thankfully I have always been healthy and up to now it has been okay. So over the years and the months the number one reason I blew my own health off is because it was expensive. We make too much money to qualify for any assistance and not enough for it to be affordable. I am sure that we are not the only family in this position and it's scary place to be. So here I am knowing something is seriously wrong and I have no health insurance. Talk about being overwhelmed!! I can't even tell you the million emotions I was feeling.

After the mammogram was read it was determined the lump was suspicious and I needed a biopsy. You can't even imagine what I was feeling hearing these words. I'm not sure who felt worse, me or Katy who gave me the news. I am forever grateful for Katy for taking the reins and scheduling my biopsy for the next day. So the Friday before Labor day I had an ultrasound guided biopsy on my right breast. Let the waiting begin!


What would you think?

What would your first thoughts be if you were told you have breast cancer? or any cancer for that matter? Or any life threatening disease? How would you feel? How would you think? How do you get past those words? How do you deal?

I thought the toughest thing I would have to go through was Ava's hip dysplasia. As a family we weathered the storm pretty well with tons of support and help. It was a very long year but we did it! Who knew 4 years later we would get hit with even worse news. Who knew that our family would have to prepare for an even tougher battle. Was that a prelude of what was to come? Did it prepare my children, my husband or myself for the worst news I could imagine?

No one thinks it will happen to them. I certainly thought never me. I'm healthy. I'm strong. Well I guess I was wrong. It can happen to ANYONE! September 7, 2016 my life.... David's life... my kids life was FOREVER changed.

So back to my original question.. What would your first thoughts be if you were told you had breast cancer? My thoughts... I like my breasts. (I'm 41 and they're still perky!) I don't want to loose my hair! My kids! How will I tell Jack and Ava? David! I can't do this! I have to do this! It's like having instant ADD. I moved from one thought to the next. I couldn't process anything. I couldn't think straight. This sucks!!!

I am hoping by blogging it will help me process my feelings and keep everyone up to date. Regardless of the million thoughts going through my head, I know I will "Fight Like a Girl" and win this war. I will fight for my life. I will fight for my husband and most of all, I will fight for my children!!