The title says it all. Two years today, I had surgery to remove a soft tissue sarcoma from the vastus medialis muscle of my right thigh. I’m glad I’ve reached this point. : -)
What have I learned so far???
God has been my rock and redeemer throughout all my trials. I still know to trust Him in everything. Because he delivered me in those trials, He is there in everything else. I still need God’s grace everyday.
I appreciate the life I have been given. I know I need to build relationships with others. I’ve taken for granted a lot of things.
We all face various trials in our lives. And we all experience difficulties. You don’t have to let certain situations bring you down. I know we wish that we would feel comfortable all the time. Life of course is not like that.
Life can still be stressful.
Your world is turned upside down after a diagnosis. You are not the same anymore. And then you start to appreciate everything that you already have and not to waste it.
All interactions and daily life changes, despite the same routine. There will of course be worry or anxiety around the corner. We don’t know where we will be five years down the road.
I am thankful for all the comfort God has provided. I trust and depend on Him daily.
I met with the doctor today for followup of the scans on Monday. Good MRI and CT. And I have the next 6 months scans in December, then I go to yearly after that. I’m glad for the good results.
Also, it is two years ago today, that I had a biopsy of this tumor. The diagnosis of it was not able to show its true nature. That is very common with sarcomas and it can be easily misdiagnosed. Which of course can delay the proper action that is needed. I am glad that I had it removed, even though I was told it was benign. 🙂
Anxiety can happen with dealing with scans. Especially with all that I have been through, it easy to fall back into that feeling. I know that I will never feel normal. I’ve never experienced that. What I feel would be normal is not having to deal with any medical issues or trials of that nature. I know everyone has different experiences along the way. But going through all the surgeries and other related things, has shaped my life in great ways. I know that God has been there the entire way. I’ve depended on Him since my first surgery at age five. Even today my hope and trust is in Him. And I don’t know what the future holds, but God has been preparing me for it. I still have to rely on Him everyday.
I’m ready for next week to be here already.
I never thought I would this happen. Even though I have been through a lot. The feeling of wanting answers but waiting as the the day approaches can set life back. Scanxiety is setting in.
It is more of a combination of things that has made this set in more.
Well, with leg pain and discomfort setting in, back in late March. Then general feeling of not sure of what is going on but to wait to see if is just temporary. I was able to have an ultrasound on my leg last month, and it was all clear. It did not clear up answers in that respect. But my leg was still not feeling normal. So, I’ve been going to physical therapy for the past month. I’ve found out that my right leg is much weaker. Most of that is likely due to the large chunk of muscle being cut from both surgeries in 2013 for better margins. (The muscle that was largely cut out was the vastus medialis muscle and its function is for knee extension.) And yesterday was the last day of physical therapy. The goal was to strengthen the the muscles supporting the knee and ankle/foot. It has definitely provided improvement more than I realized. I just have to keep up these exercises.
The two upcoming six month scans are the MRI of the femur and CT of the chest next Monday. One checks the surgical site for recurrence and the other checks for metastasis in the lungs. The common site for a sarcoma to go next is the lungs. Still watching that to make sure everything is still stable there.
I’m sure everything will be good. There are days that everyone experiences that seem harder than the previous one. And I still have to trust God in everything because He has constantly provided. In every aspect of my life.
[NOTE: I put this post on hold from 8/3/2014, and just now got back to it on 8/9/2014]
Well, it seems the past several months have been a blur. I just came to that realization early this morning (5:30) and thus the feel to write this down(6am ~).
It may even go further back. But I know even though I am experienced, having been through more than someone should have to go through dealing with surgeries from a young age.
It is a lot for a five year old to start off with a major surgery. I don’t recall how long the surgery lasted. I remember bits and pieces of being in the hospital before the surgery and recovery afterwards. I remember the initial blood draw before the first surgery. Then possibly two – three hours later, they wanted to draw more blood. I was not happy of course, having to go through that whole ordeal again so soon. That day I learned about my holding my breath during the blood draw so it wouldn’t hurt. Well, that’s what I was told but most likely used to distract me from the needle going into my vein. But truth be told, I’ve held my breath every time since then, which is too many to count. And I don’t recall anytime hurting using this technique. So, I think it works.
Next, I remember seeing the ceiling and going through a few double doors as I am pushed on the bed on the way to surgery. When I was recovering in the hospital, the only thing I do remember is playing this video game in the hospital with my mom. This will sound old but it I think it was pong or variant of that. It an actual table based version of the game and you are looking down upon it. She had me walk back and forth after each game or so, to the other side. Each step did hurt as expected but I had to learn to walk with this new device (Harrington rod) in my back. And since no physical therapist was there to actually help. We were left to do this on our own. Of course there was a lot of recovery time back at home, but I don’t remember that. But those are the memories of my first surgery.
It got easier with each surgery, to accept and go on. I did have to learn to walk again with each surgery. Here is another reflection of the time on one of my surgeries, when I did not want to drink the horrible tasting medicine used to relax me before surgery. It was a small ordeal, and I went into the bathroom after drinking the small cup. It left a awful aftertaste, and I tried to get rid of that taste the best I could. The thing is you are not allowed to eat or drink any liquid after midnight, so water was not allowed to wash away the taste. I was already nervous about the surgery, and telling a child you need to drink this to feel better. It does not equate with them especially allowing the taste to linger while waiting to be rolled away. One tidbit I found out later that I could take a shot instead of drinking the liquid.
Well, when the next surgery rolled around. The nurse came over after I was checked in and waiting on the bed in the at Scottish Rite Children’s Hospital in Atlanta(Where all my spinal surgeries were performed) She then had with her this all to familiar yellowish orange liquid. I told I didn’t want to drink that and rather have the shot. She was quite surprised. It was the best feeling ever not having to drink the medicine. Shots I can take, I don’t like drinking medicine before surgery.
— I’ll save more for another post.
But back to the main point. Even after all those surgeries, and removal of the pheochromocytoma. It still does not prepare you for finally hearing this tumor is not benign and it is a sarcoma(cancer). It still fundamentally changes you. This time was different. I’m not sure how distance I’ve been this past year in communication or going on with life. Just taking each day as it comes. I’ve realized I may have ignored and not talked to people when around them. There could possibly be mixed emotions or feelings stemming from this lack of communication. Even though I don’t say much on what is going inside, there is more there than you realize. Probably a lot built up over the years. I am not the best communicator. It is hard to move on when you don’t know how long your life will be in the next few years.
I understand that most people don’t have to think or should they have to about death. The truth is you really don’t know. But when issues like this arise. You do think about it. It can’t be ignored.
You also do not know the Lord’s plan for your life.
I know I’m in a better position having been through these previous medical issues. Basically by going through each surgery, and being here today. It has prepared me for any upcoming trial. All I have to do is think back in amazement, how I have come this far. I know God has a plan for my life. I can clearly see has He watched over and protected me. Even though I don’t know why I have to face these trials. Everything else is small potatoes in comparison. I know that what I face is even smaller than others.
Life can easily pass you by if you are going too fast. I too need to slow down. Mistakes happen but you grow from that. You never know of that missed opportunity if you don’t take it now. I’ve learned from this past year, you need to do what makes you feel better. It makes all difference.
Surgery was successful. It went smoothly. I am recovering. Good news to hear. Neurofibroma removed.
Until today. I don’t like turning something cheerful into something gloomy. I am feeling ok despite the news today. Still processing everything, I’m sure it will be on my mind as the days, and week goes on.
I went for a post-op follow up to the surgery on August 9. I was originally supposed to see a nurse practitioner but it was changed to the doctor yesterday morning. I thought good, I get to ask her questions and get answers instead of waiting till September 3.
I had a short list of questions ready to ask the doctor. I forget what was said before, the usual wound is healing well, I am doing ok etc.
It turns out this is not a neurofibroma, despite biopsy saying it was one. The new diagnosis after the specimen was reviewed by pathology is low-grade fibromyxoid sarcoma. The same pathologist actually looked at this tumor. Well, it brings up a whole new list of questions and answers.
I will have additional surgery, to remove more margins. Because why remove the amount you need to with a sarcoma, when you think it is a neurofibroma. That is understood.
I will have to wait till this scar tissue heals before the next surgery, which should be less of a recovery. I will need to be back on crutches then for a short amount of time, hopefully.
Then MRI every 6 months, for the next 5 years. I hope to continue in the protocol I am already in at the NIH, that will scan my body, and show anything that spreads which will supplement these scans.
OK enough for now. Originally though to be a sarcoma ends up being one. I am glad it was removed and not put off because it was just a “neurofibroma”. Imagine later finding out, it doubles in size and being a higher stage sarcoma. I will press on, as I always do. The only thing keeping me up is trusting n God. He has brought me through every surgery, provided for all my needs, answered prayer even when I didn’t pray. I know I will get through this, it is just another bump in the road.. “I can do all things through him who strengthens me”