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...

not exactly the results I was looking for.

It was a nerve wracking day. My stomach started to turn the farther into the day I got. My appointment was not until 3pm, so all I could do was think about what lies ahead. I prayed, a lot. I prayed for strength, for a good scan, everything. The doctor came in and took a seat. You can never tell from his expression because even when it is extremely good news he looks solemn. He asked me how I was doing and if I have been doing anything different. I just wanted to know how the scan was and he said first lets talk about how you are. There I knew that something could be wrong. I told him about my leg swelling. I thought perhaps, it could be from the exercise. I told him it was not much, but I was getting more activity in daily. I also told him that it is the same swelling that I got from the radiation and if I elevate my leg or sometimes overnight the swelling goes away. There is slight pain, but I do not have to take medication for it.

He continued to tell me that it all sounded good and it explains the scan. The scan is designed to basically light up any hot spots in the body that are malignant. Something I already knew. He went on to explain that sometimes, the reading is not accurate because there could be other possibilities of why an area would light up. There are also different levels of concern. A four, for example could be a possible inflamation or infection and a 15 or 20 would show cancer cells. He said that my leg is inflamed, this would be a result of the radiation and activity. I have to get a measuring tape and record the measurements of my thigh. He also suggested that I continue to exercise on a regular basis and continue to diet. Another PET/CT scan will be done four months from now and an MRI. If I continue to have swelling that will not get better or higher pain levels then I will have to go back sooner. He was confident that this is normal and that it will not turn into anything more. Since I have had two surgeries, six rounds of chemo and 30 radiation treatments the area in my leg is scarred and tougher than it was before. This will show as an abnormality on the scans.

I am trying to be happy and thankful for the results, but I am still scared. I wanted to hear the words clean scan and disease free. High fives all around! Instead I hear that the scan has lit up, but not to worry it might be ok. We will see in four months. I hate this waiting game. Waiting to see if something may or may not return. The doctor was confident that the scans were good enough that the port can be removed. I almost want to keep it in for another four months just in case. How sick is that? The only thing I can do now is pray. I put this in God's hands and I pray for his guidance. I ask anyone who reads this to continue prayers. It almost feels like I have had such a long journey, but in reality the journey ahead is just as hard if not harder. The unknown of what lies ahead.

Saying goodbye to a friend.

Today was rough. The memorial service was held for my friend Lynn. I was sad when I heard about the passing of Lynn. A part of me though, understood that it was time. She led a wonderfully long life that was full of many blessings. I went to the service not knowing how it was going to hit me. Sitting there listening to the music and watching the slide show of pictures from throughout her life made me cry. I do miss her and it feels weird knowing that I will not see her at the troop meetings anymore. But most of all, this is the first person that I have known to pass that had cancer since I was diagnosed. It hit a little too close to home for me. I am glad that she is not suffering anymore and she can finally rest now, but it scared me.

I am waiting to get my test results. Waiting to see if my life will be able to stay on this path back to normality or if it will get flipped upside down again. I am so scared. I want a long life full of many blessings. I want to see my daughter graduate and get married. I want to do so much more, travel, finish school. I hate that I have to go through this. Cancer freaking sucks.

Worried.

My leg hurts. It is sore and does not feel right. I am thinking it is only because my nerves are all upset. The upcoming scan has got me thinking too much. Though, I have been much more active. It feels swollen and sore, but I walked so much this weekend. Praying to God that everything will be alright.

So, I finally found a survivor forum. The original post was made three years ago, so I am not sure how these people are doing now. There are still new posts being made every month though. I guess someone else was feeling exactly what I was and posted that they were looking for long term survivors of sarcoma. It was good and bad reading their stories. So many of them have had to battle it year after year, but 40 years later (and one leg short) still cancer free. But then you get those cases where they found it early, got it out, did their treatments and 20 years later still nothing new. I laughed, I cried - a lot! Many of them posted that the pain does not go away. That they are very active with runs and relays despite having a portion of their muscle removed. They just pay for it with pain and discomfort. I keep reminding myself that pain is to be expected. I mean, come on - they removed my muscle about the the size of a fist. Gone, not there anymore. Of course it is going to hurt. You just do not bounce back from that sort of thing and carry on. It will take time and effort to get back and train the surrounding muscle. I will get there.

I registered for the Relay for Life today. I am really excited for this! I will walk in the survivor lap and I will eventually sign up Mom and Evelyn for the caregiver walk. I also want to light a Luminaria in the memory of my friend that just past. I know it is just a lap or so, but it will mean so much to me to be able to participate in this event with others just like me.

My nerves are rattled.

I am getting nervous about the upcoming scan. The imaging place called me on Friday to cancel my appointment for Monday. Apparently the insurance will not approve the scan. They are waiting on the doctor to send over additional clinicals which he has not done yet. They approved the last two scans, so I am not sure what the problem is. It is a $6,000.00 scan, so there is no way I can pay for that if the insurance does not approve it. The scan has been rescheduled for Tuesday. Hopefully, they will clear it all up by then. I hate these scans. They are awesome, but horrible at the same time. They can see everything which is good, because if your are going to have a fighting chance, you must catch it early. But on the other hand, I almost feel like I am waiting. Waiting to see how the next chapter of my life will play out. Waiting to hear those words. Clean scan. That is all I want. I am not looking forward to the results day on Thursday. The day my life can be flipped upside down in a heartbeat.

I have been looking around Facebook and some other blogs for foundations or people that have sarcoma. I did not like what I found. Most of the foundations, obviously, are named for people that did not make it through the fight. I also found a few blogs of people that were diagnosed with sarcoma. I started following them so I could come back and read them when I had more time. Well, turns out they lost their battle. It is so discouraging! I understand that Sarcoma is an extremely rare cancer. I get it. We are talking 1% small. Funding is a big issue. The more money they raise the better the research. What makes sense? Well, lets put all of the worse case scenarios on the front page. I understand the reasoning. But I would like to see the survivors. I want to see all those wonderful faces that have made it through this battle stronger and better than before. I was lucky enough to talk to two survivors of sarcoma when I was first diagnosed. One of which had the same type I did. I wish there was a local support group. To voice my concerns and fears to someone who can honestly say been there, done that, got the Tshirt, no you are not crazy and this is how I dealt with it.

I lost a dear friend yesterday. She was the grandmother to one of my scouts. When I first met her, I learned about her story and battle with cancer. She was a fighter and a survivor. Her cancer came back around the time I found my tumor last February. She gave me advice and most of all she gave me strength. I saw how strong she was when she talked about her cancer. It seemed like nothing could get her down. She always had a smile on when I saw her. She was already in chemo when I started mine, so we could compare notes, so to speak. The chemo was worse for her this time. She fought until the very end. I am glad that she finally made her way home and is no longer in pain. I will always remember and admire her. She was a true inspiration to me in my time of need. I pray for her and her family that she left behind. I think it is fitting that I leave her with this Irish blessing.

May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand.

Everything happens for a reason.

It is funny how things fall into place. The universe has a way of placing people in your life who can really make a difference. My Pet/CT scan is coming up next week. This will be my third scan. I am not nervous about the scan itself. Having to lay in a tunnel everyday for 25 days of radiation treatments has helped with that. I am nervous about getting my results. My leg has been sore for the past week. I bought myself an elliptical and have attempted to work out a little bit every day. Seven minutes a day is what I am up to now. I do not want to push too hard. I am so much more active now. I pray that this is the reason why my leg has been bothering me. I try not to worry about the scan, but it is so hard not to.

I went to a girl scout event Saturday night with my daughter. One of the speakers was Sandy with Project Pink. The Young Survival Coalition was spreading the word about breast cancer. The founder of the Girl Scouts died from breast cancer, so the ladies were there to speak to the girls. When I walked in the room, she was already starting to speak and I heard her voice which sounded very familiar. Then I got a good look at her and had a pretty good feeling that I knew who she was. I made my way to the door so I could catch her as she was leaving. Turns out she visited the Cancer Center one day when I had my chemo treatments. That day she gave me a pin from the Young Survival Coalition. YSC is geared more for Breast Cancer, but there are not that many foundations out there for Sarcoma. No matter how you look at it, Cancer is Cancer no matter what type it is... That day at the center she told me her story and it gave me so much hope! I still wear that pin on my sweater. I thought I would be able to go up to her, tell her my story and keep a strong face. Boy was I wrong! As soon as I told her that I was one of the ladies in the cancer center getting chemo when she visited, I lost it. Tears were streaming down my face! I told her how much her visit meant to me. How much hope she gave me. How that random act of giving me a silly little pin helped me more than she could have realized at the time. We talked about how hard life after cancer can be. I met her friend who is also a survivor and for the first time in a while, I felt like I was around people who really understand. Just five minutes of talking with those ladies made me feel like I was normal, not the odd ball trying to fit in. She took a picture with me and I walked back to my kid feeling really good. The moms there asked what was wrong and I cried again of course. My daughter came up and I told her who the lady was. My kid loves the pin she gave me and the story behind it. She was upset because I didn't grab her and take her over there. She wanted to meet her too.

I am amazed at how things tend to work out. When I am feeling down or my hope starts running low something happens in my life to give me a boost. Who would have thought that six, seven months after chemo I would be at an event that just so happened to have a cancer survivor there, who visited the center during one of my treatments. I am a true believer that everything happens for a reason. I have often thought that eventually, I would like to volunteer one day and be one of the survivors that go to the center to visit with the patients. I want to be that person that inspires hope in someone else. Seeing Sandy reaffirmed that for me. This is my chance to make a difference in someones life.