Am I missing the little things?

I was almost to Kaukauna when it dawned on me, I drive this drive on auto pilot. I am aware of what goes on around me, the cars the places of business, the landmarks. If there were no other vehicles, I could probably be blindfolded and make the drive to Green Bay. I almost guarantee I would arrive unscathed. My trip today was again to see a doctor. This one to see the surgeon about my liver and a follow up from taking out my stent from my pancreas. I am not sure if it was the weather or what, but my mood wasn't bright and chippy today. In fact, I was quite sullen. Not my usual self, that's for sure.

I had a lot on my mind and nothing all at once. So basically I was conflicted with emotion. I have come to accept these days and in accepting them, I try to feel the emotions, instead of fighting them. So in that fashion, I am going to share these thoughts with you. Some may be hard to read, please forgive me. Some may seem weird or out of place, again please forgive me. I am giving you a glimpse into my vulnerable side today.

Before my treatment started I had a couple of weeks to wrap my head around all that was going on and try to prepare for things unknown. For the most part I tried to stay very positive. I did this mostly for my kids and husband. I was always the strong supporter in our house. If I could handle things and stay in control all was good. So true to myself Pre-treatment was like me, positive. During treatment it was fight or flight, but still positive. I didn't have any time to be negative. I needed to be positive regardless of what was going on. Even on deaths door (I was there a couple of times) I needed to stay positive. 

It has only been after treatment that I have come to understand the gravity of the situation. I could have died. I am having complications still. There may come a point in my recovery that we come to a hurdle that cannot be jumped. Medical intervention is an awesome thing, but what happens when they don't know what to do anymore. Here are a few things I know... If the cancer comes back, and it can, there is nothing at this time that they could do to save me again. If I were 60 and having the complications that I have, they would let nature take its course. Not because they don't care, but because there is only so much intervention they can do. 

Today I thought about the what ifs. I took a moment and let negativity control my thoughts...

I am okay with where I am going. Death in and of itself does not scare me. My fright comes from leaving those I love behind. I also have faith my husband will eventually have eternity with me. However, I want to make sure my kids will be there as well. That thought gets me. I want to be a part of their spiritual walk. I need them to know what I know. I don't want to leave before I am confident they will be with me in the end.

I don't want my husband to be alone. We have talked about what we would do if one of us passes. Neither of us feel we could move on to be with someone else. The thing is, I want him to find a partner, someone to share his life with. He is an amazing man and he deserves to be loved by someone if I am not here. How do I get him to do that? He doesn't like to talk about death let alone moving on. 

My kids...

Our oldest; today I wondered if I would make it to the 5 year mark and be able to see him become an Eagle Scout. He is an amazing kid. He wears his heart on his sleeve, he is very smart. Every day he surprises me with his knowledge. I cry just thinking that I possibly won't be there for this milestone in his life. Not to mention girlfriends, college, marriage and kids. I don't want to miss out on any of that. There is so much that I want to say to him, but it's not the right time now, I don't want to scare him.

Our only daughter... I don't want to miss her laugh, it's contagious. She also is bright, funny and so lovable. I want to be there for her first boyfriend, for the prom, for college and for her wedding as well. But mostly I want to someday see her become a mom. She has this nurturing nature about her and I don't want her to not be able to talk to me as I did with my mom (about babies and such).

Our youngest. Good Lord, he's only 8, he's too young to face life without his mom. He needs me. I need him. His smile, his laugh ohhhh he's just like his dad through and through. 

So how will their lives continue if I am not here. I am not saying I am all that, but at times I am all that to them, as they are to me. I know deep inside they will all move forward. They would come together and be strong. They would make it all okay. However, they would go through so much pain. Everyone that has lost someone goes through that pain. Just thinking about that kills me more than anything. So each and every day I try to find the little things and hold onto them. I pray that none of this will ever be relevant and that it truly is just a bad day. That it is the weather that makes my mind think negatively. That tomorrow will be a better brighter day and my family will not be faced with losing me until I am much much older. 

Till Soon~Scar

Adjustment Disorder

According to:http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001928/

Adjustment disorder is a group of symptoms, such as stress, feeling sad or hopeless, and physical symptoms that can occur after you go through a stressful life event.

The symptoms occur because you are having a hard time coping, and the reaction is stronger or greater than what would be expected for the type of event that occurred.

Let me start off by posing a question. How would any normal human being adjust to having their world flip turned upside down? I obviously had a stronger than normal reaction. I still struggle with the actual diagnosis, I don't believe any one person out there can predict what is normal for someone who has gone through what I have in the last two years. That said, I do see a therapist and I think seeing her prevented me from going into a full depression and for that I am grateful!

I hate admitting I have a mental disorder. It almost cripples me to say it. All I want now is to be normal. I want to wake up, drink my coffee, get ready, get my kids ready and off to school. Then I want to do something productive in my day, get kids, come home, make dinner and enjoy the evening with my family. Is this too perfect? Probably, but this is why they say I have the disorder. I can't accept my life is not going to be this easy and carefree. I have problems, medical and non medical. I am human.


The months before cancer I was normal... as normal as Wonder Woman could be. I held a part time job, I went to school full-time (15 credits) to which I was on the Dean's list, I had, and still have three kids, a husband, a house to clean and dinner to make, I baby sat before and after school for my best friends daughter, I also volunteered at the kids school, lastly, but not least I had homework, a ton of it;  typical life of a mom, right?  

Fast forward through the surgery, chemo, radiation, chemo, and now liver disease and we come to present day. I no longer go to school. I was enrolled to go this last fall, but when we went on a family vacation they kind of had an intervention showing me that I just wasn't ready. I have days where I still can't get out of bed. So what happens when I can't get out of bed for school? How many professors are really going to understand? 

I don't babysit for my friend anymore. I still work part time but it usually ends up as a marathon day of work. I skip work for various health reasons or doctor appointments and then have 6 weeks to catch up on. Like this weekend. I worked for 6 hours and I still have at least 5 more to go. Ugh. I no longer have homework to do, but my kids are older, and I sit with them while they do theirs or at least am available to them if they need me. I still have a house to clean, and to make it easier on me I try to save some money and pay to have some things cleaned, like the bathroom and the floors. I would love to say I still put dinner on the table every night, but I don't. I strive for that, but 4 out of 7 days, it's either pizza, nuggets or hot dogs. Not gourmet by any means. 

My life has changed. I am not me any more. Someone else has taken up residence in my head. I have to write myself notes to keep up. There are times I have had conversations with people and I don't remember them at all. This, thank God, is getting better. My poor hubby... One day we had the same conversation at least five times. He was very gracious and kept answering politely. Eventually he said, Hun we talked about this already more than once. I honestly didn't remember, but I trusted him that we had. 

I can't say I have a bad life, it is just different. Take today for example. I wanted to get a load of laundry done, grocery shop, clean the living room floor, write a blog and make dinner. No problem, right? Wrong. I got the grocery shopping done, got home ate breakfast and got sick. Went to bed. Got up at 1230 laid in bed because I still didn't feel well. I ended up feeling better as the day went, but nothing except dinner got accomplished aside from the grocery shopping. We had homemade Chicken Alfredo with Brussel Sprouts and Texas toast. That was an accomplishment in and of itself. However, I still look at today as a failed day. I didn't get the other stuff done. I fail in my eyes almost daily.

With this adjustment disorder came a therapist. Her name is Renee, and she is wonderful. I didn't like that she labeled me in the beginning, but I have come to accept the help. Through this therapy I have been learning how to accept the way my life is. So the hardest thing for me to accept was being a stay at home mom. When my husband and I married, that's all I wanted, to have a family and be able to stay home with them. I wanted to raise my babes, not someone else raise them. So by the third kid, I was exactly that. After L started school, I decided I was destined for more. I needed to get out and make something of myself. So I went back to school. So why is being a stay at home mom so damn hard for me now you ask? Because I didn't choose it. I didn't choose any of this crap. I didn't choose cancer, sickness, surgery, back injury or the liver disease. It is not what I planned on doing. I just lumped being a stay at home mom with the negativity of cancer. It's not negative at all, I do enjoy the job, but on my terms.

Ultimately I need to take one day at a time. I have to schedule things into my life and when I do I have to make sure I don't schedule too much at one time, for fear of becoming over worked and then getting sick. I hope things will change, I pray for that. But there are times I wonder if my prayers are unanswered because I am supposed to be learning something and giving up what I cannot do. If this is the case, I may never heal completely. I still want to do it all. That is my mentality. I am Wonder Woman after all, and doesn't she just do it all herself? 

I hope this blog will invoke empathy for someone you know that is going through a hard time. It doesn't always have to be a sickness. It can be the winter months and the person has the seasonal disorder. It could be a silent medical illness only visible to the person that has it. Whatever the case may be, please do not judge others. Love as you want to be loved. You truly have not walked in their shoes, and they have not walked in yours. Be kind.

Till Soon.

ICU

I thought I knew a few things going into this... The pain would not be bad because it would be controlled. I would not wake up on a vent. I would wake up in a recovery room. My family would be there soon... or so I thought.

Nothing was as they said it would be. It took me months to realize the smell I smelt was actually something I tasted. The nurse was clearing an iv line and I tasted the saline. Ick, is all I can say. I cannot describe the horrible taste, it just is horrible. I woke up in ICU, I had made it out of surgery but it took much longer than expected and my pulse ox didn't recover as they had hoped. Hence the vent. I was helpless. I tried to cry, I did a bit, but then my stuffy nose made it harder to breath.  Let me try to explain how the vent felt. Breathing is involuntary, we just do it. So when I was awake, I wanted to breathe on my own. But there was something (the vent) that made it harder. I don't know if others fight it, but I know I did, hard. The nurse kept telling me to relax. Easier said than done.

After what felt like hours, although it really was minutes, my husband, mom and in laws came in. I had quite the mixed reaction from my point of view. I don't know what was going through their minds at this time, I don't have the heart to ask. So from me. I was mad. I was tied to the bed, this was so I didn't pull any tubes out. Looking back, I would have. I was scared and I was in pain, boy was I ever in pain. Whoever said you can go through this surgery and not feel pain obviously has never had this surgery. I have a high pain tolerance. Some of things that should have caused pain, but I dealt with are: Kidney stones, had them never knew until I had an X-ray. Supposedly they hurt. Another would be child birth. 3 kids, no pain meds other than something that relaxes you. Yeah, right. lol

Somehow I thought in my state I would be able to convey to them I was in a lot of pain. Somehow I managed to write something on a white board to say I was in pain. Yeah right. Not sure what I wrote, probably a bunch of scribbles, but somehow they knew. The nurse said I couldn't have pain meds because I wasn't waking up. I was screaming in my head, NOT AWAKE? WHAT THE HELL AM I DOING RIGHT NOW? I AM AWAKE! I don't know how long that lasted. I eventually got meds. I was very irritated then. I was also very nauseous. I hate feeling like that. My mom told the nurse, I remember he laughed. I wasn't going to throw up, I couldn't because I had a tube down my nose to make sure my stomach stayed empty. I was okay, even if I didn't understand I was.

I loved that my family was there for me, but I resented everything. I couldn't see beyond the pain. I have come to find out with pain if you don't get it dealt with right away, it creeps in and gets worse and then you have to fight an uphill battle. But I would love to tell the nurse and doctor that it is painful, you can't have someone slice you open from side to side and up your chest and it not hurt, plus the inside pain. God Almighty, it hurts!

That first night was long. I just wanted to go into my own world. I work that way. When there is pain, I need to close my eyes. I need to drift far away. It is how I cope. But every few minutes there was someone in my room doing something. The ICU is always lit up. My television was always on, which was okay because I think I was always aware it was on. I remember once the doctor came in to check on me and he got so mad. It looked like I was sleeping. I wasn't I had my eyes shut dealing with my pain. He didn't stick around long enough to see I was awake. He gave the nurse the orders for the day and said he would be back. He was a lot.

 He also brought Wendy and Spencer with him. I love them. They are his side kicks. I don't know their titles. They could order drugs and things, so they may be doctors too, but they we didn't say doctor. We called them by their first names. Wendy was there at night. She was my savior in this. She would make me laugh. The first time they made me stand up was a challenge, so many tubes connected to me and iv's. Plus I had 3 drainage tubes out the sides of me, it truly was a challenge. Well when I stood up, something pulled, it hurt, it stung, it was horrible. I sat back down and thought I am gonna die. That's their plan. Ugh. It was Wendy that realized the drainage tube on my left side pulled when I stood. She finagled it to make it not hurt. Thank God for Spencer and Wendy!

There are a bunch of horrible details that go with the ICU visit. I am still not at a place I can freely talk about them. Maybe someday. It wasn't the ICU's fault. They had a wonderful nursing staff. They treated me well. I just have PTSD from the surgery. I really do. So there are a lot of things I have blocked and really don't want back. It was horrible frightening journey that I am not completely ready to relive. So what I have written is what I can. I was in ICU for a total of 3 days. The next blog is about the hospital stay. Many challenges to overcome in short amount of time.

Till Soon...

Surgery

It's been almost two years since the life changing surgery I had. So as to give you as much back ground as possible this post is dedicated to my surgery. The name of it is called The Whipple Procedure. If you Google it you will come up with a lot of scary information. Of course because I am human, I Googled before I had it done. BAD IDEA, DON'T DO IT!!! 

We met with a wonderful surgeon in Milwaukee in January of 2011. He is a transplant surgeon, he works in the area of kidneys, liver, pancreas and does the Whipple. Remember the other Doctor, Dr. C,. he said he would find the best, well he did. His name is Dr. S. Now this man scared me, but I got over it because he said he would save my life. I owe my life to him. I did not make this surgery easy for him because remember I was overweight. I also was one of the youngest people to have this done by him. Have I forgot to mention, everyone said this cancer was something someone in their 60's gets, not someone who is 30. However, he said he would take care of us. We would be home by my oldest son's birthday (early February). There was something we needed to know though. The day that we scheduled the surgery might change last minute if he was called to do an emergency transplant. Transplant organs don't last long and he had to do them. It was what he did. We said we understood, and my thought was, this man is going to save my life and others too. God Bless his works! 

My husband, mom and I sat at the hospital for what seemed like hours that day. I needed a ton of blood work and pre-op stuff to make sure everything was good. When we finally were able to go home I had the worst headache ever. I just wanted to hug my kids and then fall asleep and wake up the next day and hope it was all a dream. Good luck, right? 

The surgery was a week from that day. I had seven days to arrange my house in great order. I had to set up everything. I do the bills, I had to give all the passwords to my husband and write the dates to when everything was due. I had to figure out who would be with the kids while we were gone. I had to figure out the dog situation. I had to clean my house. I also wanted to write letters to my children. These were good bye letters. There was a chance I wouldn't make it. In any surgery there is a chance you won't come out of it. However this one the number is almost 3x's worse than a regular surgery. There was a chance, albeit still small, that I wouldn't come home again. So I did all that. The letters were the hardest. I didn't want to be sappy, I just wanted them to know how much I loved them and if I wasn't here for E when she went on her first date, I wanted to tell her what I would have said in person. I also ended up writing many more letters to loved ones. None of them know, which is good. It means I came back.

Everything got done. The kids were taken care of, the house clean, the dog to my in-laws and bills laid out for hubby. We could go have this done and it was taken care of, I was prepared. My husband and I woke up at 1 a.m. to get ready for the drive. It was two hours. Lone behold, the phone rang at 1:30 and Dr. S had been called away, so my surgery was on hold. I don't have much to say about that morning other than we had to do it all over 5 days later. So we got up again, got ready and picked up my mom. C's parents were to meet us in Milwaukee once they got their youngest to school. The support system was in place. We then drove to Milwaukee. I knew in my heart of hearts this was it. My life as I knew it was changing. I didn't understand the gravity of it, but I knew something was changing. 

We got to Milwaukee around 4:30. We needed to check in at 5. We paced the floors for a while and then went to the surgery admit. My stomach by this time was in knots. I was so scared. How in the hell was I supposed to say goodbye to the love of my life and my mom. I didn't say good bye to the kids, I kissed them on their heads and left love notes all around the house. It was easier to let them sleep than to see the hurt in their eyes knowing I wouldn't come home for almost two weeks. I had never been away from them that long. Back to hubby and mom. They at least could come in the admit room with me. We joked and laughed. They made it light for me. I have no idea what their thoughts were that day. The only thing my mom said was she felt peace finally. After weeks of praying she finally felt peace and knew we would make it no matter how much it all sucked, we were going to be okay. The time had come it was time to say goodbye. I hugged my mom, I kissed my husband. Both which I prayed were not the last time. 

Now, I sat in a cold clinical room. The drapes were all that separated the patients. Dr. S. came in with a huge smile. I don't really remember anything he said other than, when you wake up the pain will be taken care of by meds don't worry. Also, we will get you home for M's birthday. It is all going to be okay. I was brave on the outside, but my insides were a mess. My only question for him was when are they putting the cath in? Will I be awake for that? He laughed and said no. I would be out. They had central lines and other things to do, but they would do all that when I was out. I did ask if he was ready for a long day. He said 7 hours isn't that bad. It would all be okay and yes he was ready. About 30 mins later the nurse gave me some medication. She said it was a calming drug. I was calm alright I don't remember anything until I woke up...

WHAT THE HELL!!!!!!!! Why does it hurt so bad? Oh my God, I can't breath, what the hell is in my mouth? GET IT OUT! Shit, why are my hands not moving. THEY TIED ME TO THE BED!!!!!!!!!! All of sudden a bunch of beeps. I was biting on something in my mouth, I still couldn't breath. OHHH THE PAIN, THEY SAID IT WOULDN'T HURT. THEY LIED! The nurse came in and told me to calm down, take slow steady breaths. How? I wondered. What is wrong with me, where am I? Oh MY GOD WHAT IS THAT SMELL!???

Till Soon...