Not a care in the world :)

I have realized how much I have changed my outlook on things since my diagnosis.  It is amazing to me how much something like this can make you open your eyes to what you may have been missing on a day to day basis.  I did not recognize this immediately but over time I am seeing how much more free and open I am to certain situations then I was before.  For instance, I would have never just planned a long vacation on the spur of the moment, let alone not save for it far in advance.  However, I did just that the day of my scan.  I came home and I booked our family on a 7 day cruise only one month away and really didn't even think twice about it.  I shocked myself on that one!  I have always said that I want my children to experience things I never had the chance or opportunity to as a child and we have always worked hard to do these types of things with our family. The difference is that I am a TOTAL Type A personality (some say controlling:-) saver, future planner, and not a bit of me can do anything on short notice without a complete anxiety attack.  I did just the opposite of everything I am by booking this cruise, and I have not second guessed that decision a single time!  I also in the past probably worried a bit to much about what other people thought about me and I hate to admit it but a lot of that had to do with my insecurities about my appearance.  My husband did a lot of events and socializing without me (not by his choice) for that reason.  I felt more comfortable just staying at home and missing all of the parties, games, and other social events.  Now I look back and think what the HELL was I doing.  I cannot even believe that I let my insecurities get the best of me and miss out on so much over the years!  As great of a husband as I have, it was very upsetting to him that I would not include myself in more things in the past.  I can tell you though the look in his eyes today when I say I will do things I never would have done before is simply priceless!  I am not here on this earth to try to impress anyone, or try to get people to like me.  I even got out on the dance floor with my youngest and danced without a single other person out there dancing, and not even thinking for a second that people might be looking at me, can you believe that?!!!  I am who I am and that is a wife to an amazing man, a mother to 3 remarkable children, a sister, a daughter, a granddaughter, an aunt, a cousin to many and don't forget a great friend.  Quite frankly those are the people on earth that I live for and I do not want to sit at home a single minute and miss anything with them.  Speaking of family, that is one thing that I am taking more time for.  I am talking about my distant family, the ones that don't judge you but love you unconditionally no matter how far they are away from each other.  The family that found out about my diagnosis and called or texted me on a daily basis just to make sure I was OK.  The ones that came to our rescue, helping in anyway they can to get us through this hard time.  Moving forward I am not going to go weeks not speaking to my loved ones because I am just so busy.  What a sad thing to say that you are too busy, and unfortunately in the past, I would always think I had tomorrow to call or plan to see them.  If I would know then what I know now I would never even use the word "busy" when it comes to family because we never know what tomorrow brings and those times should not ever be taken for granted.

If you know me, you know that I have always said that life is too short when it comes to our actions in the present but unfortunately it took my cancer to realize that I did not always live up to my own words.  I now am noticing this and I never want to say that I wish I did something, or that I had any regrets in life moving forward.  I want to do things I have never done, visit places I have never been and live life like I should have been this whole time!  I am especially going to dance like no one is watching and with "Not a care in the world".

Why so many tears?

I woke up this morning with so much on my mind.  It feels very heavy today but when Eric asked what I was thinking I could not give him just one answer.

A very emotional day for me so far and I have been told that is ok from time to time.  It isn't because I am in pain because I push through the pain.  It could be that the tears are happy tears. Yesterday we had a wonderful family day and so many blessings that make me smile, like when Kyle was trying on shoes at Dick's and told us he needed to test them out as he continued to run around the little track in the shoe department :)  I am sure the tears could be the sadness and grief I feel for a old friend from school that passed away unexpectedly yesterday.  Even though they are old memories, the memories are still there. She was such a great person that I was always quite jealous of because she was liked by all.  The tears are definitely for her best friend that now has to find a way to go on without her by her side in the present life. I cannot even imagine not having my best friend here by my side.....   I know that I am crying because I read some stories of others that have my same cancer that are suffering everyday as they approach their end of life with no way to stop it.  Some of my tears are for sure happy tears for a friends little boy that is celebrating his birthday today 7 years cancer free and how can you not get emotional over those great stories of miracles :)   I cry sometimes out of the little things my kids do to make me smile, like when they tell my I am their favorite mom(as if they had a choice:) Or when my 9 year old son dedicates a song to me and tells me it is our song "Fight Song". I have been very upset lately that my dear grandfather is not doing so well after he fell a couple of weeks ago and pray he will find the strength to keep getting better. I also cry over a loved one that is going through some scary medical test and hoping that everything will work out for him and he will not have to go through anything like myself.  I woke up last night upset after a very bad dream about my upcoming scan.  I have heard others talk about Scanxiety and did not put much thought into it but now since Wednesday is fastly approaching, my heart is beating a little faster.  I try not to cry when Eric looks me in my eyes and tells me everything will be ok and how strong I am but that fails every time.  I am sad that every 3 months I have to find a way to not get the Scanxiety.   I find myself very emotional when my daughter sent me a picture from her first formal at college, she is the most gorgeous girl I have ever seen!  

Sometimes my tears are simply from fear alone.  There are so many fears in life we all challenge on a daily basis and I would guess most people have my same feelings of letting the tears flow.  I do know that my tears however are not just shed for sad times but for the happiest of times.  I tend to cry when I am filled with happiness and joy.  It does feel better to let it all out at times but then I have to grab a tissue and keep counting my blessings.

The surgery day had finally arrived

The day of my surgery seemed to take forever to arrive. When we made the decision to go through this treatment plan, my patience (or lack of) was very low and I needed to just get this over with.  I joined some support groups online, thinking it would help me prepare for the big day but it actually consumed me with fear instead.  I know they say stay off the Internet, but that is easier said then done. Talk about scary!  I would read stories from survivors wondering if their cancer might present like mine. Then on the other side  there were stories of those living currently with the disease, suffering every day with all options used.  I reached out to a few ladies that actually had dealt with my particular surgeon.  They were complete angels in every sense of the word.  Not only did they help me with words of encouragement, they actually gave me some great advice.  Two completely different stories with one being the patient and the other being the caregiver of her late husband.  I exited the support groups for my own sanity and decided if I had any questions these two angels would be the ones to get answers from.  I felt with their advice and the other information that I had read previously that I was as ready as I was ever going to be and a lot of that came from these two remarkable ladies.  My anxiety was out of control at times and I remember telling Eric that I just need it out of me.  Speaking of angels, I cannot even tell you what I would have done without him by my side. He lifted me up daily and kept me grounded in every way.  Then came the day of my surgery.  I was terrified but numb at the same time.  In the back of my mind I thought for sure I would be crying all day but with Eric and my dad there, I was good:)  The only part I remember before going into the operation was asking my doctor if he was ready and he told me that he made sure he read the instruction book the night before so he should be fine :)   I woke up in ICU with Eric and my daughter smiling at me.  I immediately asked how it went and he said, "They got it all".  I could feel my smile from ear to ear. He explained that the surgery was 6 hours long, there was more then they thought but still not as bad as it could be.  I was minus a few parts which I had some ideas of what I was going to lose but there were definitely some extras.  They removed the culprit, my appendix along with the cecum and part of my right colon, gall bladder, spleen, greater and lesser omentum, full hysterectomy,pieces of diaphragm, and a piece of my liver.  These all had to be removed because the mucus from my appendix that carries the cancer cells were on these organs.   Since this is a sneaky disease that is more or less slime-like, it is hard to see on a CT scan what all is affected until they open you up.  With all that gone I still am considered very lucky that it was caught earlier than later because no new tumors had grown from these cancer seeds yet.  The Hot Chemo is suppose to mop up all the microscopic cells that might be floating around after the surgical portion.  The chemo also shut down my digestive system so I had to have this nasty NG tube in my nose that frankly pissed me off more than anything...... One thing my angels told me was to walk, walk, walk and then walk some more for faster recovery and to get my system moving quicker.  I was up walking 24 hours after my surgery, not walking miles but needless to say I was walking.  I remember thinking two things, I have to keep walking to heal faster and I need to keep walking to get this terrible tube out of my nose!!!!  Days went by and the nurses made jokes that I was walking laps around them.  My little sister flew up from Florida to help me.  We had a reversal of roles during this time, I had always been a mother figure to  her and she now is at my hospital bed taking charge which is something I can never thank her enough for.  We all became very close to one nurse in particular that was my angel at the hospital.  She took extra special care of me and the day my pathology results came in,  Eric, myself and my angel nurse cried with happiness.  We were happy because they got all the cancer, which means I am cancer free, my pathology showed that it was low-grade, no further chemo needed and my recovery was going remarkably well considering what I had just gone through.  There were angels around me at all times and I could definitely feel them. Nine days later I was being released with the doctor saying every 3 months I would be visiting him for blood test and MRI's.  There is always that chance of it sneaking back up on me but that day only one thing was on my mind.  That day was my little son's 9th birthday and my goal the whole time was to be home to celebrate with him on his special day.  I made that happen :)

The Hardest part of my journey to date

When I think of the hardest part of finding out my diagnosis, it has to be with my children.  My daughter could not be any more perfect than she is.  She has always been such a GOOD girl, and I know we all think our kids are good but let me tell you she truly is!  Then comes the day that I was diagnosed and had to walk into the house and look at her.  I had been crying for days so she knew what was going on, to a point,  but she kept telling me that it would be alright.  She looked at me and my heart sunk, I told her my worst fears were, in fact, my reality.  She does not like to see me cry so she somehow kept it together, with just a few tears shed.  Her exact words were "You are still here and you will be fine".  My 20 year old daughter was consoling me and keeping my chin up, she is mature beyond her years!  We specifically talked about not telling the boys.  There are a few reasons behind that and one of them was that it was Christmas time.  The other concern we had was that we didn't want them to worry and disrupt their normal activities.  My oldest son is a very gentle hearted boy, kind to everyone,  who would lose sleep every night if he thought something was wrong.  My worry for my youngest son would be that he would associate my cancer with a young boy at school that had been fighting for his life with brain cancer.  I decided to take the easier road and instead of explaining, try to ignore and move on like nothing was wrong.  They knew I was going to have surgery on my appendix, but that was all. Little did I know that the day before I left for surgery would be the day I couldn't keep it together in front of the boys.  That day was a roller coaster for me. Not only did I spend my days before surgery stocking up on everything around the house but I also put together my boys important information, meals, activities, school work, and daily patterns for my mother-in-law, who was so kind, and took a leave from work to help us with the boys. I had to start my prep for the surgery and did not want the boys to see me go through that again. It was the second time in two weeks, so my in-laws came over to gather up the boys and all their stuff since they were staying with them through my hospital stay.  When that moment came and I had to say goodbye to them, I have never felt that way in my life.  My heart sunk to the ground and my anxiety kicked in full throttle.  Honestly, there was nothing I could do to stop holding them and stop the tears from flowing.  I knew in my heart that I would fight this with everything I had but I also could not help but to think that I had to say goodbye to them for now, for a week , for a month, I had no idea how long...  I tried to keep thinking that hopefully my prayers would be answered to have a successful surgery.  As we were hugging, the boys both looked at me and repeated what my daughter had told me weeks before... "You will be fine"  My children, my life, my everything, the reason I fight so hard, and the reason that I will be fine :)

First comes Bitterness.....

So there I was awaiting this monster of a surgery, which has been named by others that have endured it, MOAS-mother of all surgeries.  I had to keep going, keep working, keep doing my motherly duties, and most of all keep keeping it together.  I found myself bitter more times than I would like to admit.  I wondered at times do all people that have gone through some type of cancer diagnosis go through these feelings of bitterness?  Eric told me that 1 in 3 people will have to deal with cancer at some times of their lives and that really stuck with me.  I would be at Karate with the boys and find myself looking at different parents wondering if they have had to go down a similar type of path as this before.  I would be at the store and think in the back of my head, I have a 1 in a million cancer, how does this happen? Of course I get the crazy one that no one has ever heard of! Most of all I would find myself with the same bitterness when people would even ask me how I was doing.  I am a freaking mess, don't know how I will pull through this surgery, why me,  I don't know how to explain it and thanks for asking.  That is what I was saying in my head.  I knew that I did not want to consume myself with any negative thoughts no matter how bitter I felt at the time.  I told myself, of course other people have walked in my shoes, and everyone has a different story to tell. I needed to figure out how to get control of this and quick!  Everyone was reaching out to me, old friends, new friends, family from both near and far.  I did take complete advantage of taking everyone up on lunch and dinner invites to catch up and see everyone before the big surgery day.  I felt so loved by so many, and even though I knew it before, I really felt it now.  

I cannot even begin to think of how to thank my loved ones and friends for showing me that affection and doing more then they even knew they were doing.... getting rid of my bitterness :)

Interviewing for the Scary HIPEC procedure....

I got through the holidays and soaked in every moment with my family not knowing what my future would be.  We started to research our next steps.  So many scary statistics that I needed to just focus on my personal story and not everyone else's.  Actually I would be lying if I told you that I was focused at all, but Eric, he was the one that kept it all together for us.  He compiled a pdf file of all my medical records and then we started looking for doctors that specialize in this rare diagnosis.  These specialists are all over the US and there are no more than 20 total.  It is weird to think today how much time I spent looking at these surgeons photos, and medical resumes to see if they somehow spoke to me......Our first appointment was a referral in Indianapolis.  She was a considered a specialist but I couldn't find much about her history with the disease.  She explained that I was in better shape than most with my stage but that it would be a chronic disease that every 2-3 years I would have to address in one way or another.  She wanted to do a debulking surgery which basically opens me completely up and just removes any disease found and any organs that look like they are affected by the cancer.  She did not want to do any chemo because she thought it would cause more harm.  She was very positive and told me that it is slow growing and my CT scan looked like it has not spread that much.  We liked this surgeon, she definitely knew the disease but I did not know how I felt about no chemo.  The treatment that we thought we needed is listed below:

The "standard of care" for Pseudomyxoma is a combination therapy that consists of a cytroreductive surgery to attempt to remove all the tumors, any organs with signs of cancer and effected tissues. Then a procedure known as HIPEC-heated intrapertioneal chemotherapy, is performed.  The average surgery takes 10 hours long and before the surgeon is done the chemo is heated and poured into your belly.  The temperature is usually around 107 degrees and it circulated through your abdomen for 90 minutes to kill any existing non-visible or microscopic tumor cells.

We decided to get more opinions to see how other specialist would treat me.  The interview process started and Eric sent my records to 2 other surgeons.  Instead of traveling all over the US we did phone consults which aren't the ideal situation.  Even though they are saying this is slow growing, I needed it out of my body and the sooner I found "THE" doctor was better for me.  We spoke to a surgeon in California who was very helpful, but he did think the CHEMO was a must. Why would we just do the big surgery, remove all the cancer and not finish it off with the chemo? He did tell us that he knows there is a specialist closer to us and he thinks being close to a support system is very important.  Even though we already sent our records to a specialist in Nebraska, we wanted to talk to the Doctor that was close to home.  NAPERVILLE, we found the specialist 5 minutes from Nicole's school.  What are the chances of that?  Eric did his medical liason duties and there just happened to be a cancellation that day, so they could get us in.  I can remember walking in and looking for things that I liked or didn't like at his office.  This is a complete interview process, what's his history, how is his bed side manner, what did he think about my previous consults with other surgeons and most of all did I get that feeling that he was the one.  He explained everything to us, the surgery, the recovery, the complications and the follow up.  Then I asked the dreaded question that was on my mind from the beginning, "How long was I going to live", he looked at me and said if I was his wife or daughter he would make them do this procedure and I had a good chance of living a long life.  SOLD, not only did we really like him, we also felt very comfortable with him and I think after all the interviewing we had done, he was my one.  

NEVER did I think of the steps involved in finding someone to try to save your life, or having the choice to find the right doctor to trust. Many people don't get that same opportunity and I am grateful every day that we were able to HIRE the surgeon that would take very good care of me :)

I HAVE WHAT?

As I came out of my out-patient procedure, Eric explained that the doc saw some mucus on my ovary. He said it could be nothing but he took it and will be sending it to pathology.  My doctor came in and showed me the pictures and it was just gross looking stuff, no masses just jelly substance hanging around.  I went home that day and didn't really think twice about what the doctor said until he called me 4 days later and told me that he wanted me to get a CT scan.  He told me the possiblities of what it could be and one of them was Pseudomyxoma Peritonei, but when I asked him to repeat he said to wait because he didn't want me to start looking online.  He knows me to well......   Being that I am a very impatient, Type A personality, I had to get my CT scan right then even if it was 8pm.  The doctor called me around 10:30 with the results and explained that there does not look like any masses but my appendix was large with a cyst on it that looked like it could be the cause for the mucus.  Although the CT scan did not show much fluid/mucus, it did show some so he was going to have me do blood test and get a second opinion.  In the mean time I was online trying to find out anything that I could about this disease.  It is a very weird one, considering that sometimes it shows up as benign, and only 1 and a million people suffer from this.  I kept thinking that it could be something else and not to jump into thinking the worse but in the back of my head I knew that is what my diagnosis was.  Thats when the fog started for me, I couldn't focus, the world stopped spinning and I cannot even tell you how many tears I shed.  December 12th was the day my doctor got the results back from Mayo clinic that confirmed my worse fears, Appendix Cancer with Pseudomyxoma Peritonei  I wrote in a journal that day for the first time ever:

"I never thought something like this would happen to me so shock is an understatement!  It was hard to tell everyone so I sent a text and Davinna said she would take care of keeping everyone up to date. How do you tell people the news, I can hardly tell myself...."

 I told some of them to look it up online and others I told not to.  There is not a great deal of studies out there since it is so rare but some of the information that is online is all gloom and doom.

Here is the basic explanation of my cancer :

Pseudomyxoma peritonei (PMP) usually begins as a slow-growing tumour in the appendix, called a Low-Grade Mucinous Appendiceal Neoplasm (LAMN). Over time, the tumour produces a jelly-like substance called mucin. This can cause the appendix to swell up like a balloon. The tumour can then break through the wall of the appendix and spread tumour cells into the lining of the tummy (the peritoneum).

The tumour cells and mucin build up in the lining of the tummy, putting pressure on the bowel and causing symptoms. It can be many years before symptoms become obvious. Unlike other cancers, PMP rarely spreads via the lymphatic system or the bloodstream. It usually remains inside the tummy, spreading along its internal surfaces.    

It was only a few weeks until Christmas (which is my favorite time of year) and it is very important for me to pull it together for my family.  I can't be sick, I have stuff to do!!!!  Nicole handled it like the tough lady that she is, and I wouldn't expect any less. Eric would tell me to get all my tears out and I would take complete advantage of that but then when the boys were around, I put on my best face! 

There was a reason I had that outpatient surgery... Everything happens for a reason

Yesterday was 3 months for me since my life saving operation.  I can remember driving through a snow storm to get to the hospital.  Eric and my dad assured me that we would get there no matter what but I was more concerned that my surgeon would not be able to travel back from his conference and then what!?  So much had happened leading up to this date and so much planning to try to make it as smooth as possible for my family to have a snow storm screw it all up.  We made it to the hospital and then the next day or so was a blur for me.  As I woke up Eric knew that I would want to know everything and he did tell me all.  I really didn't expect to have lost so many parts but I knew it was a possibility. To think that a small out patient surgery with my OB/GYN could lead to a cancer diagnosis that all the medical professionals in our town had only heard of.  Now 3 months have gone by since they took 9 organs all at once and flushed my belly with heated chemo.  Doesn't that seem crazy!

 I am counting my blessings every day but sometimes my head veers off to the dark side and that is why I am starting this blog.  I am hoping to be able to write down my thoughts and then remember all that I am lucky for.

Today is a beautiful May day!  My boys are running around the house like monkeys, the dogs are barking, and the breeze is flowing through the house.  I was diagnosed on December 12th and never did I think almost 5 months later I would be so ALIVE and feeling so good!

Blessings come in small packages:)