What Sarcoma Looks Like

So, by now you know that my husband has fought cancer and is currently two years without a recurrence. He has Sarcoma cancer…neuro-fibro-sarcoma (tumor labeled as spindle cell and triton tumor). It’s rare. It is so rare that when the original tumor was removed by an orthopedic surgeon in Okc we were actually sent to Houston because the surgeon had never even heard of this type of cancer. SO off to Houston we went. He was diagnosed in the beginning of April and we had a consultation in early May with follow-up surgery and treatment beginning in July. Our worlds were turned upside down. Do you know what cancer looks like?
My experience of cancer before this had been as an onlooker. I watched from a distance so I didn’t really understand what happens to families with cancer. I had no earthly idea that this disease literally affects every single aspect of life when you are living it. Cancer was the nucleus of our lives, and in some ways it still is. While we don’t schedule our lives around treatment and surgery anymore, we do schedule our lives around scans and appointments. We also have to worry about every single bump. A lump could be a muscle knot or another tumor. Feeling ill could mean cancer is coming back or that he has a bug. We literally don’t know, and it stinks.
As I write this right now I am actually in tears and worried.  I KNOW what the Bible says: “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God” (Philippians 4:6 NIV). TRUST me when I say that verse is hidden in my heart and worn on my sleeve. I have recited it in my head and with my voice more times than I can count…but you know what? I am also human.
Being human means being sinful…not that worrying is a sin, but sin makes us prone to worry. Humanity makes our hearts less trustful, plus, I don’t know God’s plan! I have ZERO control over this situation! I have to sit and wait for scans and pray that things go the way I want them to. I just have to continue to have hope.

BUT, you wanna know something else? It is really easy for someone who has never lived this to tell me all those things never realizing what being truly hopeless feels like.  I’m not in ANY way saying that any of the kind words from our supporters over the years mean nothing, I’m just saying that we live this day in and day out. Cancer is never on the back burner in our home so it is a lot harder to be hopeful when you live with it daily. AND, it is a lot easier to say things like: “don’t lose faith, keep praying, be patient, God has a plan” and so on when you don’t live this every day. I mean, of course I have hope, but that doesn’t come easy. I mean, I hope and pray we are out of the cancer danger zone, but the truth is that for the rest of my husband’s life I will worry.

Cancer is so scary and there is so little research on sarcoma cancer in general that it makes worrying much easier. There is no known definitive cause for sarcoma…there is no known hereditary link or genetic abnormality to link to this cancer. Scott’s in particular grew through radiation and many sarcoma cancers are not responsive to chemo, so the option is surgery. That is the only option in many cases; unless you get the entire tumor and tumor bed removed and then you just have to pray there are no hidden mutant cells in the body that will metastasize. That’s basically what you get with sarcoma. So hope is here, but so is fear.
Anyway, Scott has scans this week. I love that they keep such a close eye on him, but I despise the wait. I despise waiting for results…I despise waiting on scans…and the weeks leading up to scans are always tense and emotional in our house because a part of us is always scared. The reason is because I remember when the first bump popped up in Scott’s arm. He went to the e.r. and a few doctors and we kept being told it was a cyst or this and that. We had zero fear as he went into that very first surgery. We figured he would get the cyst removed and all would be well and life would go on. Well, he got it removed, it went for biopsy, and in that moment the world came crashing down. We I got the phone call it was the worst day of my life at the time. I remember everything about that moment…isn’t that funny? How we can forget so much, but I remember everything about that call and after. I remember the sound of his voice, the words he said, hanging up the phone, crumbling to the floor…I remember letting my boys watch tv the rest of the day and me hiding in the bathroom a lot because I had no idea how to tell them their dad was sick. I threw up…I just fell apart.
After I spent the afternoon falling apart I jumped into action the next day calling cancer centers and setting up appointments. So he had a second surgery, then it came back six months later and he had a third surgery (that call was the worst day of my life too). SO, I am nervous. I am nervous about scans because it is scary and I am human. I do trust in God, but I don’t control cancer and cancer is scary. My doubts and fears do not make me less of a believer or a lesser Christian…they make me human, but I don’t think people think that.
So, in my house cancer looks like that. It looks like fear of the unknown and doubt that it is gone. It looks like children being just as nervous as the adults an us all acting out the week before and of scans and tears of fear before followed by tears of relief after. I pray to God with all my heart that Thursday will bring more tears of relief for my little family. Will you pray with us, please? I have tears in my eyes again as I plead for prayers. We live life in between scans right now, but since scans are this week, life stands still. My days are filled with praying and pleading with our Father non-stop. The rest of the world goes by while we anxiously await testing Wednesday and follow-up with the amazing Dr. Satcher Thursday. Noah has his first t-ball game tonight, and we will try to enjoy it, and that hour and fifteen minutes will be about Noah, but home again will mean lying awake in prayer.

“The Lord is righteous in all his ways and faithful in all he does. The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him; he hears their cry and saves them. The Lord watches over all who love him, but all the wicked he will destroy. My mouth will speak in praise of the Lord. Let every creature praise his holy name for ever and ever” (Psalm 145:17-21 NIV).


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