It's been a while...

It has been a long while since I looked at this site. A good thing yes... Today was a good day. Yesterday I had my 6 month scans. A Pet/CT scan and an MRI. Is it sad that I am now so used to the scans that I am starting to fall asleep in the tubes? LOL, the MRI tech was getting mad because I would fall asleep and twitch, then they had to do the sequence again... He kept talking to me every so many minutes to make sure that I was still awake. After the scans my nerves set in. Luckily, work has been so busy that I haven't really had much time to think about anything else. My appointment with the oncologist was today. The moment I left work I was a total wreck. I think I cried the whole way home. I prayed for strength and courage. But I knew that one word from the doctor could turn my world upside down. Just one word.

I got to my appointment an hour early. Anxious? Why yes... I just wanted to know. I gave it to God. I put it in his hands and asked that he take care of my daughter and give me strength. They led me to the room and took my vitals. Blood pressure, perfect. Pulse: 132. Just a wee bit nervous. As I was walking to the room I overheard the doctor order a same day MRI for a patient whose cancer spread to their bone. I just about tossed my cookies.  The 132 pulse rate makes more sense now, huh? He finally came into the room and starts off by telling me everything is fine and I have nothing to worry about. This is why I love my doctor. He hasn't seen me in six months and he can read me like a book. I am cancer free. We talked more about my case. Things that will never go back to normal, things to look out for. He was really happy about my weight loss and to hear that I turned vegetarian. Told me I was doing a good job and it was very apparent. I don't have to see him for another six months.

Today, is not only the day that I found out that I am still cancer free. It is also my anniversary. Today, nineteen months ago, I was declared disease free. And I am happy to report that I am still cancer free. When I was first told that I was cancer free, I was shocked. I knew that I had a long road ahead still with the chemo and radiation treatments, but I kicked cancer's butt. I was ready to take on anything. Now 19 months later, I feel like I have not done anything that I wanted to do. I wanted to make a difference. Liposarcoma is such an obscure cancer. I have only met one other person that fought it. I have met other types of sarcoma survivors, but even those were still few and far between.

In this next year I have three goals that I would like to achieve. First, I want to walk a 5k. Cancer took a good amount of my muscle. I want to work to show that even though cancer took my muscle, I am strong enough to overcome it physically. So I will be getting off my lazy bum and making it happen. Second, I want to make a difference in someone's life. I found an organization that matches survivors to patients usually with the same type of cancer. They call and visit during their treatments. I would like to volunteer and help someone with their journey. I think it would also help me with some of the issues and fears I face as well. Third, I will start writing my manuscript. It will be therapeutic for me to get it all out (bonus: no co-pays on therapy bills!) and hopefully if I can get it published, may end up helping someone on their own personal journey. Topping it off with graduation next semester. What an awesome year ahead!

and so the wait begins

I hate this. I feel sick and nervous. They completely threw me off this morning before my scans. They told me that I was scheduled for a Pet/CT scan and then the MRI. Nope. First up was the MRI. I really hate MRIs. The machine is tiny and loud. I also thought that I was going to get to listen to music but no, they handed me a pair of earplugs. They stuff me into this tube for twenty minutes and then they bring me out to start the IV contrast. So, while he was getting me ready the guy, in a really thick accent asks me, "So how long have you had the mass?" Panic began to set in. I looked at him and asked "So you saw a mass in my leg?? Because I had the mass removed." He began to trip all over his words. I am so freaked out! Why would he say that if he did not see a mass? Then he asked my history. I told him how I had the two surgeries, chemo and radiation. He had no clue that I went through any of this. I am so scared right now. I started to cry. For the rest of the time I was doing the MRI I cried. Then I cried in the waiting room waiting for my next scan. My mom told the next guy what the first guy did and he was so nice and attentive. The scan was a little different because they wanted to focus more on my lungs. They let my mom sit in the room with me.

I couldn't focus after that. Once I left I was just crying. I thought back over the past year of all the surgeries and the pain. The chemo and radiation. All of the heartache that I put everyone through. How did I get through all of it? And how could I possibly do it again? I drove straight to the church. I kneeled before the altar and prayed. I know that if it is His will, I will have to go through it again. But I asked for Him to carry me through it. I could be worrying about nothing right now. It could be just a misunderstanding. Either way I need prayers. I do not see my oncologist until Thursday. Plenty of time to go crazy worrying about the results.

My Nerves are Rattled again.

So it is that time yet again. Three glorious months have past by and wouldn't you know, I have started to feel normal. Though, one might ask what actually is normal? Are any of us really normal to begin with? Well, by that I mean of the non-cancer variety. The people that walk around without a care in the world. Of course I know that have some cares, but you get my point. The last three months have been great. I am back to school and hitting the books hard. My last year at Phoenix has officially begun. I am a Senior, can you believe it? In one year I will be walking across that stage in my cap and gown. I have put on some amazing events in my local area for the girl scouts. Many of you know that I love girl scouting, it's my passion! We held an awesome twilight camp for them too! I took my baby girl on a weekend trip to Austin to get out of town and visit my best friend. We had an absolute blast exploring Austin. I walked in the Relay for Life. Oh Yeah! That was an amazing night! I walked a mile, a WHOLE mile! Of course, it was not all at one time. I would walk a lap and rest and then walk another lap. But I did it! And when I was finishing my survivor lap the North Shore ROTC gave me a big HOOAH. That is about when the tears started streaming down my face. I did it. I beat cancer. That is when I realized, I will never be normal again. Cancer has changed me, for the better of course. I smell the roses and have even started to enjoy watching the little lizards in the garden. I appreciate my family and my daughter. She is still my rock, the glue that holds me together.

It is so weird though, because on Monday I will have to step back into the Cancer Patient shoes. I have my three month Pet/CT and MRI on Monday. I am so nervous. My follow up is on Thursday, the 12th. I am praying that my scans come back clean and healthy. I feel fine. The funny thing is that I look back over the past year and I cannot believe that I went through all of the treatments. Yes, my leg is limited and I know they took out a fair amount of the muscle. It does sort of hurt here and there but it is not like the crippling pain from after the surgery or even the pain that I remember from the tumor pressing down on my nerve. It is just faint phantom pains that my surgeon said were normal from the healing process. Electrical tings of everything still trying to boot back up. I wish that I could fast forward to Thursday. I hate the whole waiting thing.

So, I am asking for prayers. Prayers of strength, that I am still cancer free! Prayers for my family, especially my daughter, who is finally starting to understand more about what I went through. Prayers that this will all be behind me and that it will never come back.

A Second chance

I feel as though I have been given a second chance. Not exactly a redo, but a wake up call. An opportunity to look back on my life and find all of the imperfections that I am not happy with and fix them. The first thing I really need to work on is my health. I want to make sure that I am doing everything I can possibly do so the cancer does not come back. I know, this is crazy talk! I have no control over these "bad cells" forming but in my head, yes I do. I want to make sure to keep calm and stress free, active and healthy. I checked this book out from the library...
http://www.google.com/books?printsec=frontcover&id=g0Fpf0mPXmQC#v=onepage&q&f=falseAnitcancer: A New Way of Life

The guy was diagnosed with Brain Cancer at the age of 31 (I was 30 when I was diagnosed) and it was totally out of the blue (just like mine). Actually, it was just by chance that he volunteered for an MRI when one of their volunteers for a study did not show up. I can relate to all of the feelings and emotions that he expressed in the book. Even down to the guilt that he had when calling people to "break the bad news." When I was first diagnosed, it was the week before Mother's Day. When I was finally able to speak about the diagnosis without getting choked up, it was that Friday or Saturday before Mother's Day. I refused to call most of my family and friends that weekend because it was their special holiday and I felt guilty for telling them that I was diagnosed with cancer and ruin their day.

The book is a really good read, though there is a lot of medical jargon. I skip some of the parts about the studies and statistics... I do not like statistics and strongly believe that no matter what your cancer type, stage, age, etc. you are not a number. Some medical journal with a bunch of numbers in it is not going to determine your fate. You make the decision of how hard you are going to fight and how much faith your are going to have. But the book does talk about a New Way of Life. All of us should be aware of what we put in our bodies and how we live. I need to pay extra attention to what I eat as well. I am not going to turn into a tree hugging, grass eating hippie overnight. No, but I have made a decision to eat local, organic produce to start. Then I will start working on cutting out all of the sugars and other oh so yummy foods that I will miss so much. But I would rather live a long and healthy life with my daughter. I have learned that the green leafy carrot tops are edible and they combat the growth of tumors. Who knew!?! They don't taste very good, but hey I need as much help as I can get so Huzzah for Carrot Greens! I just chopped them up into teeny tiny pieces and threw them in with my mixed green salad. By the way, raw kale tastes awful! But remember, it is crazy healthy for you! It has been linked to lowering your risk for at least five cancers and it has anti-inflammatory benefits (chronic inflammatory = a breeding ground for tumors). I encourage you to look at what you are putting in your bodies. It is better to take preventative measures than trying to fight off something for the rest of your life...

One year just around the corner...

The past few months have been a little hard. Last February was when I first discovered the tumor. Though at that time, I had no idea what it was. I was terrified because I knew what I did not want it to be. The people who were in my life at the time reassured me that there was no way that it was a tumor. I knew that it hurt, a lot. And I knew that whatever it was, it should not be there. I also knew that the nurse practitioner that I was seeing was doing no good so I found another doctor to get a second opinion.
About this time last year, I already had my first MRI and was told that it was a mass. One that must be removed, which meant surgery. Ugh, the only surgery I ever had was to get my wisdom teeth removed. I also heard a word that I refused to Google. Sarcoma. This was the worst case senario. First, they said it was a hematoma, worst case senario it would be a mass. Then they told me that it was a mass, more than likely a collection of fat, worse case senario a Sarcoma. I did not want to know what that meant because it did not sound good.

My first surgery was April 18th, I believe, or somewhere around there. So about this time, I had seen the surgeon and was making preparations for the surgery. Preparing myself mentally, spiritually.  Preparing my daughter of what to expect... Little did I know, that it was just the beginning of a very long journey.

This past year has been a huge test in all aspects. I never thought that I was a strong person, but when you are put in a situation where there is no other choice your true strength shows. I owe it all to Him. I pray daily for strength and for all of my fears to be turned into courage. I ask that He not walk beside me through this journey, but to carry me through it instead. I placed my life in His hands and trusted that He would get me and my family through it. Here I am one year after my first surgery, celebrating Easter with my family. I am truly blessed and I pray that all of you enjoy your many blessings this Easter.

Goodbye port! I will miss you, but not really...

This morning I woke up and my stomach was uneasy. Port removal day. Excited and scared all mixed up. We dropped off my daughter and I drove to the hospital. Check in was quick, I have done it so many times before so I knew the drill. I changed and waited for them to come in and tell me about the complications. Signed release papers. Again, kind of sad that I know the drill. The nurse that drew my blood was not good at all. She put the IV in an odd place on my arm. It hurt so bad! Then she could not draw blood from it, so what does that mean? Another stick, yay! Finally, I was on my way up. Luckily the patient transport guy had a sense of humor and had me laughing on the way up. That is always a good thing. When I got to the holding room, I could hear the lady next me - we were only separated by a curtain. She was old, r e a l l y old. She was there to get her port installed so that she could start chemo. I felt bad for her. I wanted to tell her that it was going to be alright, but I do not think that she understood what was going on. Then I felt bad because when the nurse came to talk to me, we were laughing and joking and celebrating. The nurse made a big deal about how good this day was and how far I have come. I really appreciated it, but I still felt bad for the lady next to me. As they wheeled her out, I said a prayer for her. Then as they wheeled me in I realized that in the rush of things, I forgot to pray for me! So as I was shimmying over to the table I was praying my little heart out.

The doctor told me that there were two options. I was confused and slightly hoping that one option was going to be to remove it with his Jedi mind trick rather than slicing into me. The nurse popped in and said no, I need the juice. Then I realized he wanted to remove it without the mild sedation and I started to laugh telling him no, please start the drugs now. I also asked if I could keep the port and they explained that it was biohazard and they do not allow people to keep them anymore. I didn't think to take my phone with me into the surgery, but if I did I could have had them take a picture of it. Interesting. Before I new it, the drugs were in and they started numbing the area. I could feel when they started, so they had to give me a little more to numb the area. I didn't even feel when they pulled the port out. Then there was a bit of excitement. Apparently, there is a small plastic valve that goes between the port and the tube. It was not there. It also was not in the cavity of where the port was. They had another guy come and look to make sure nothing was left behind while another guy was pulling up my scans from when it was installed. Then they did a chest xray (remember I am still opened up at this point) to make sure that the valve was definitely not there. I start freaking out right about then when I realize I am still open and exposed. They finally pull the scans from the installation and realize that the valve was not there to begin with. They ensure that everything is fine and begin to stitch me up.

When I get back down to recovery, they have a tray waiting for me and I see this lady walk by. Ahh, a familiar face! You have to remember, I was still loopy from the cocktail they gave me. I looked her and was like, "Hey, I know you! Your are from the Cancer Center! Do you remember me!?!?" We talk and catch up since I have not seen her in months. She is doing good, you know considering. The time after goes by so quick. By the time I was done with my tray, they were taking the IV out (which I have a lovely ginormous bruise from) and I was on my way. On the way home, I touched my neck. It freaked me out for a minute because I could not feel the tail from the port. Panic set in for a few seconds when I realized, duh, it was just removed - you are not going to feel it anymore. It will be something to get used to.  I took a nap when I got home, but then the pain woke me up. Wish I had another day off to sleep, but off to work in the morning...

Separation anxiety?!?

I am getting very nervous. When I was at my appointment on Thursday, the doctor cleared me to get my port removed. Jokingly, I told the nurse that I would like to have it taken out the next day. She said OK and began to write that date down and I freaked out. Told her no, I was kidding and that I have to psych myself up for it. So we settled on Monday. Tomorrow. I had my port installed in June of last year. I cannot believe that tomorrow, I will be on my way to the hospital to have it removed. It is kinda weird. I have developed this odd relationship with my port. I hate it and cannot wait until the day I have it removed. That will be a huge mile stone for me. But on the other hand. It has been with me for almost a year now. It will be weird not having it there. Not having to go and get it flushed every month. Not being able to feel it when I move my neck. Then I wonder if we are rushing into having it removed. Should I keep it in just a bit longer, just in case?? Then again, this doctor has so much experience, I am sure he knows what he is doing...

Some have asked me if I am going to keep it. It can be my trophy, my badge of honor. Heck, I did pay for it after all. But then some would rather throw it out and not think about it ever again. I am still not sure. I do know that I am not excited about the surgery tomorrow. I was a nervous wreck when I had it installed. They don't knock you out or strap you down. They gave me the equivalent to a six pack and told me to lay down and stay still. Ugh! So again, asking for prayers for the procedure tomorrow.


Just one more step closer to being somewhat normal...



As I have gone through this journey, I found a set of videos that have helped. I cried, I laughed, I was able to relate. Though I did not name my port, we have gone through a lot. I must say that this video is not for the squeamish, but it is kinda funny...