Steve's Journey

Just wanted to give you all a quick update about my radiation. It was originally starting yesterday but it’s being postponed due to insurance issues. My insurance has denied the type of radiation my radiologist thinks I need. The new start date as of right now will be on Monday April 11. My radiologist appealed the insurances decision but that appeal was denied as well. Now She has sent a comparison of the two types of radiation to the insurance company with a second appeal. We are currently waiting for their response.

hi everyone,

This is Steve again!

I just wanted to let everyone know I was able to come home Sunday morning from the hospital. I am doing well, and thanks to a few pain medications I am in very little pain. I will give a more thorough update in the next day or two about the surgery and recovery. Thanks for all of your thoughts and prayers during this time of uncertainty. Finally I wanted to say thanks to my parents for keeping everyone updated while I was in the hospital.

lots of love,
Steve

Hi again!

Today has been a much better day! No surprise…he got both chest tubes out and will get his final IV out today!! He’s also been up walking…5 laps around the nurses station! Woo-hoo! So he is on his way out of here…probably Monday. A great place to be when you need their help and care but we’re all looking forward to being home. We do thank God for each person involved in his care. There has not been one who has not bent over backwards to care for him and all have been kind on top of that! We continue to thank God, as well, for all of you. Your thoughts and prayers continue to mean so much.

Steve says hi! We’re off for another walk! Yea!

God bless,

Don and Trish

Hi Everyone,

It’s Friday and we’re here with Steve. Not surprisingly he is in quite a bit of pain. Thank God for the pain meds!! On the other hand he is sitting up in the chair eating lunch and walked a few steps! That’s encouraging! He’s still hooked up to 2 IVs, 2 chest tubes, and the heart monitor. The chest tubes are the most irritating right now. Through it all he is being his usual kind self saying thank you to everyone and trying hard to be cheery!

Steve says hi and thanks for the support. He says he has felt God’s presence and peace.

Please continue to pray for physical comfort, that he can do his coughing exercises (they hurt), and that his body would begin functioning normally (trying to say this in a polite way! ). Also, for a continued sense of God’s presence and peace.

Thank you so much. We appreciate you all and love you.

Don and Trish

Hello everyone,

I wanted to give you an update about yesterday. First, I was wrong about the radiation treatment, I guess I misunderstood what the person on the phone was saying, it ended up just being a consult with the radiologist. So I did not have any treatment like I was thinking I was going to.

I met the doctor who will be doing my surgery yesterday morning. He was a very nice man and I felt much better after this meeting than I was feeling before it. He feels confident that he will be able to take out all of the tumor, probably 3 ribs, and a wide margin of soft tissue without needing radiation before the surgery. We would have to wait to find out the official word until today, Friday, because there was a sarcoma tumor board on Friday morning, where they would be discussing my case, with many different types of doctors including my surgeon, and the best way to proceed.

We, my parents and I, then had an hour and a half until we needed to go to radiology, so we sat in our car playing games on our iPad and laughing at how bad we were. It was a fun way to relax before the next appointment.

As I said earlier this radiation appointment ended up being a consult and not treatment. Again it was a positive appointment, the radiologists we talked to were very nice, and we were told how radiation would happen and what some of the side effects are.

This morning we were called with the final decision for moving forward. First I will be having an MRI of my chest. This will help them when they are planning the margins for the surgery. Surgery will be happening this coming Thursday March 3, 2011. It is exciting to know this tumor is finally coming out! While they are doing surgery they will also be doing a bone marrow biopsy. I am anemic and they aren’t sure what is causing the anemia so they are doing some further investigation. After 4 weeks of recovery time from surgery I will begin radiation treatment.

Steve

Hello everybody,

We talked over the phone with the doctor who performed my second biopsy Friday night. He told us that they had found out the type of cancer I have. It is called clear cell sarcoma. It is a rare soft tissue cancer. After talking with my doctor I found out that I will be having surgery to remove the tumor, possibly up to 3 ribs will be removed as well. I’ve been told that I may have radiation before, during, or after surgery. We will be talking to a doctor, hopefully this week, about the details of what is to come. Also I was told chemotherapy is unlikely as it has not proven to be very effective with this type of cancer.

When I was first told what my cancer was I didn’t know how to respond. I looked it up online right after I got off the phone, but there was no comfort in reading what the different websites had to say. The only place I have found comfort, and even joy, is in God. That’s not to say that I am not encouraged by my family and friends and all the love you have shown me. I am very encouraged, and it makes me want to fight all the harder against whatever I will face down the road. But no matter how much love I have from family and friends, I still will have all my worries and fears in my mind. It has been God’s word, the Bible, that has shown me peace even when I know my days may be fewer than how many I had been planning for my life. One of the most amazing things I have read about is God’s love. I don’t think I will ever fully understand how great his love for us is, but His love has given me joy, and laughter. It has comforted me before I go to bed, allowing me to fall asleep without my mind racing with thoughts of “what if’s” or “why me’s”. This isn’t to say I’m not scared, I am, and I do have fears of all the unknowns, and fears of what dying would be like. But those fears pale in comparison to God’s love for me, for the world, and I find peace in knowing that my God is in control, in life and in death. He has a purpose for this cancer, and I am excited to see all the ways He is at work in my life, and the lives of all those who are sharing in my journey.

If you want to read about clear cell sarcoma my family has found some places that talk about it. There are other places that talk about clear cell sarcoma if you do a search on google, here are the links:

This is a link to info on “soft tissue sarcomas” in general
http://www.mskcc.org/mskcc/html/435.cfm

This is a link to an article about clear cell sarcoma(this also talks about another cancer that is not clear cell sarcoma, so be careful to see which one they are talking about)
http://sarcomahelp.org/clear_cell_sarcoma.html

My prayer requests are mostly the same from my last blog:
1. Figuring out how radiation will fit into the plans before, during, or after surgery.
2. Still working on gaining weight, thanks for all the tips!
3. for my family and all they have to go through whether they want to or not.
4. That I will continue to put my trust and hope in God no matter what happens.

Thank you all again for your thoughts, prayers, comments, and cards they mean more than you will ever know,

Steve