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Tuesday, April 13, 2010

No Chemo Only Waiting

I know you are all anxiously awaiting yesterday’s report. I haven’t really processed this all but here goes.

Dr. Ravi is really nice. And smart. He took time to go into great detail about the science behind my cancer and the science behind the treatment. He showed us the algorithm that all doctors at high volume centers use to determine chemo or no chemo. He let us know, quite nicely, that he doesn’t just use the algorithms, he writes them. The doctor knows the mathematics of cancer. Period. Did I mention he’s smart?

The chemo that is used to treat my type of sarcoma is harsh. The drugs are so harsh they would most likely give me permanent heart and kidney damage and give me a poorer quality of life than trying to manage the cancer if it returns. And on top of all the horrible side effects, the chemo is only 40% effective. In addition to the poor effectiveness, since my cancerous tumor has been removed already there is no way to measure if the chemo is actually working.

The theory behind a harsh chemotherapy treatment is that you try it and if it’s not working (the tumor's not shrinking), you stop the treatment so that it doesn’t damage the body further. This is not an option in my case because the tumor had to be removed to provide a diagnosis. If there was a milder chemo in pill form, he said he would prescribe that. But there's not.

So he worked through the math with us and said that in his opinion, the odds of my cancer returning is only somewhere between 10 – 20%. Not bad odds, I think, considering I was told they were 50/50 or 60/40 in January.

He said if it were his family he were treating, he would recommend no chemo. Too risky.

I’m not sure what I was looking for yesterday because I cried throughout the appointment. I cried all afternoon afterwards and I just wasn’t sure it was the “good news” everybody thought it was. I think I was hoping the doc would say that there’s this magic little white pill that will cure me and give me the greatest odds of surviving with minimal side effects. I really want assurance that I’ll come out of this fire unscathed. But for now, today, I cling to God’s promise to me that I’ll be okay. I choose to trust Him when my only other choice is to worry in fear. I choose to trust.

It was simply just reiterated that there is no cure for sarcoma. This will be with me for the rest of my life. The team will reconvene later this week to discuss radiation therapy. I’m supposed to find out Thursday. (I suspect that means I may know by next week but I’m not holding my breath.) But I’m hoping for none. I’m hoping that I hear what I heard yesterday. We’ve done all we can at this point. Those were not the words I was looking for yesterday but they are good words and today I am making friends with them. I will take them.

I think what I discovered yesterday is that there is a point in cancer when you sit in a doctor’s office and he says that there is no further medical treatment for your cancer. Sometimes people who hear that are really sick and have already tried lots of medical intervention. Sometimes they are just like me, doing pretty well and wanting to make sure they’ve done everything medically possible to fight their cancer. So even when it seems like I haven’t done much, I have to believe we’ve done all we can. Dr. Ravi reassured me that even if I went through chemo, we would be sitting in his office having the same conversation in six months. I am at the point where most patients want to be already.

He reassured me that the most important things I did to live the longest life possible free from cancer were to self-diagnose my lump, get to the doctor early and get the best surgeon possible. Surgery is a valid treatment for cancer and getting the best surgeon you can who knows the most about your cancer can be life-saving. It was for me. Had I waited another month or two to discover the lump, see the doctor or have the surgery, or even if the surgeon had left cancer behind, chemo wouldn’t be optional. Chemo would be my reality. Decreased heart function and kidney damage would be staring me in the face. Early detection saved my life. And the best news is I don’t even need more surgery. I had nothing removed but the cancer!

Dr. Ravi shared wise words with me. He told me he can treat cancer, he can manage any recurrence and he can give me the best quality of life possible but it's up to me to learn to manage the uncertainty and he can't take that away. Ever. Cancer brings uncertainty to the surface and medicine can't take it away. At all.

So for now, I’m hoping to return to MDA every three months for clear scans and get outside the two-year window. Then three, then four, then five. Once I get outside the five-year window my odds drop even lower of it ever returning. I will have annual scans for the rest of my life.

And, yes, we have a contract on our current home. We have inspections today so say a prayer they go smoothly. We are negotiating out our new home in Conroe. It will work, we are just ironing out the details right now. May 13 everything closes. Whew! Four months have changed everything! Almost.

Waiting is my new way of life. Deciding what to do in the wait will be how I live. I’m ready for marathons, moves and whatever else life throws at me!

So today I continue to live just as I have for the last three months. Only better.

“Wait for the LORD; be strong and take heart and wait for the LORD.” Psalm 27:14

“We're depending on God; he's everything we need.” Psalm 33:20

26 comments:

nancygrayce said...

I think your feelings were so entirely normal! I'm so relieved and think that this doctor has the right plan for you and God has the ultimate one!

His Girl said...

Wow- no wonder you were crying!Taking in all that information was like drinking from a fire hose!
Uncertainty is a temporary situation. Even if we're uncertain about every bit of our earthly lives, we have certainty in our future.
I am so proud of you! You're doing an incredible job- keep on keeping on!

Renee Swope said...

Wow, precious friend. I feel like you just invited me into the waiting room - in your heart and in your thoughts. Beautifully written words and wisdom that goes deeper still. Remember, there is more to come. Can't wait to see all that "More" means!!

Love you!
Renee

Ashley said...

I am so glad you do not have to go through chemo. It is so hard on the rest of your body.
Your early detection should be a message to everyone, including me, to check yourself EVERY.SINGLE.MONTH.
You will move to Conroe, run in many marathons and enjoy life!
xoxo

Anita said...

Hi Lisa, Your post today had me just staring at the words, trying to figure out what it all means, trying to put myself in your shoes to get more of a feeling for what to think. But sometimes it's not meant for us to have all the answers. God asks us to trust Him and that's what we have to do.
As always, my prayer is that you will never experience any more cancer in your body, or any other attack on you or your family.
Keep living, loving, and enjoying.:)

Sonja said...

Lisa:
What a day! What a week, and what a year so far.
I'm sure all of yesterday is beginning to sound a lot better today. This was good news, and for all of us who are praying and believing for complete healing for you, this is not a surprise. So now, go about your busy life, and God is in every detail!
He has so much ahead for you!

Hugs!

Sonja

Angel Muly said...

Wow - Lisa, what a day you had. I would have been crying too or right along with you. I know I don't know you well, but have been praying for you and reading your blog so I feel like I do. You have such a sweet spirit. I am Praising Jesus for no chemo, Praising Jesus for a good doctors report, Praising Jesus for your house selling, Praising Jesus for the new house, and Praising Jesus I found your blog.
Believing God's blessings will continue to pour down on you. Love you, Angel

Jen said...

What a day! I'm emotionally exhausted just thinking about it. I am so awed by your ability to stay on focus. You are living out your testimony in front of the world, and doing an amazing job! You exude hope, Lisa. So many need to see and hear that. God has some incredible things lined up for you -- I just know it.
In the meantime, just keep on swimmming, friend.

Debbie said...

Your post had me in tears too. I am just soo happy for you that Chemo is not necessary....How wonderful that you are being spared that ordeal. I will continue to pray you remain cancer free, and that you continue in your worry free/fear free spirit. It really is a choice and you have made the right one. I am soo happy for you...HUGS AND BLESSINGS, Debbie

Alleluiabelle said...

Love you Lisa! I am so happy to read that you are spared from the treatment of Chemo. Yes, it certainly is hard on the body for sure. You have placed your trust in God and He is divinely walking with you through all of this. You are a testimony already!

My prayers continue and I wait to hear of the many more exciting things that are yet to come in your beautiful life. God is so awesome.

Hugs,
Alleluiabelle

Melanie said...

Oh, I love you, Lisa.

Smelling Coffee said...

Oh Lisa, I am so happy for you and that you are making friends with the words you were given yesterday. They are good words, and I praise God for all He is doing in and through you and your family on this journey!

Continued prayers as you continue to watch and wait and trust...
Jennifer

Queenmothermamaw said...

Oh dear Lisa, as an old oncology nurse I know this is confusing to you. You did have a great doctor. He has laid it all out for you and I have seen this type of treatment happen many times. You are so right. You trust in God and God is leading your doctor and lifting you up to understanding. He seems to be a wise physician. He has admitted he cannot take the worry away, his job is the medical and the spirit and soul is you and God. You are definitely blessed, in so many ways.
QMM

Donna said...

Lisa, thanks for sharing the wonderful report! No chemo! That is such a blessing. We give praise to God for His continuous healing in your body. We also give praise to God for providing Dr. Ravi to you - the one who writes the math stuff. Wow! You have been on a tough journey, but God has been right there every step of the way. And you have glorified God in all that you did. Know that you will continue to be in our prayers. As Renee Swope said "Can't wait to see all that 'More' means!!"

Blessings to you and your family!

Christie said...

Lisa,

Praying and knowing that God knows the circumstance and the outcome. Praying that a peace would come over you during this "waiting period" and that in this time, He would draw you nearer to Him and grow you in ways you never could have imagined!!

Always remember this acronym...CARE...Cancer Aint Really the End...God has a purpose!

Love,
Christie

Dena E's Blog said...

Kind of a loss for words,,so these are the few I'll use..We serve and AWESOME GOD !!! And You are an AWESOME woman of His creation,,totally Marvelous Sweetie...In my prayers,,Iowa Hugs from Dena

Tea With Tiffany said...

Believing you will live a long and fruitful live on earth glorifying our LORD Jesus. Enjoying your family and friends. :) Believing for peace and joy to invade you each day. God is near. He loves and cares for you always.

Chemo is an ugly monster. I've seen it's affects on my brother.

Praying for you through. You are beautiful. Thank you for sharing your life with us. I feel so touched by you.

Love and hugs,

Tiffany

Patrina said...

Lisa,
Remember that pictorial VICTORY JUMP? This is evidence of what the Lord had planned for you in that great big jump of FAITH! You can CHOOSE how you live the rest of your life....TRUSTING in the Lord with all your mind , body and soul...or fretting about all the possibilities that the big C word generates.

I am so empowered by your FAITH! You are learning to TRUST God through it all. God bless you dear heart!!

Yeah GOD!!
Patrina <")>><
His watchman on the wall

Nana Jul said...

I think Sonya said it right on the money! Very good news indeed - life and more abundantly! Nothing is too hard for the LORD!
Keep looking at HIM!
Love,
Julie

Denise said...

I love you sis, clinging tightly to His garment with you, and for you.

Laura said...

Dr. Ravi sounds like a wise and knowledgeable man. I'm glad he's your doc. I'm still praying. Still believing Him for a long and rich life for you, friend.

Loren said...

Lisa,

Just catching up on your past few days....

Wow! so.much.happening!

I PRAY my friend you are not being too hard on yourself. You are going through so much right now and I know YOU KNOW the Lord is right beside you! Remind yourself Lisa not to carry this all upon yourself...lay it ALL at HIS feet even if you do that one hour at a time. Please give yourself permission to do that ok....

Sending prayers and love to you!

Bernie said...

Lisa I feel this is all good news, the best that could be expected. I am so happy.
You have so much going on right now, but I know you will feel the blessings of your doctors news when they fully sink in.
So happy right now, always keeping you in my heart and prayers....Hugs

Gigi said...

Sweet Lisa, I can soooo understand your feelings of, "Wait...there's got to be something more I can do!" Sometimes "waiting" is the hardest thing of all. But what a blessing that in your case, you're waiting to LIVE!!! To Him be all the glory!

kim said...

Hi Lisa,
I stumbled across your blog awhile back and wanted to end a quick comment to you. I have a different type of breast cancer than you...and I had to do the surgery, chemo and radiation route, yet still live with a chance of 35% reoccurance. So, I know your fear...but I have learned to wrap that fear up in a pretty box with a bow and hand it to God and He has replaced the fear with joy and peace. (to be honest, I only have the fear when I try and take it back from God.) There is one scripture that I would like to share with you that was encouraging to me while I went through treatment. Psalm 118:14 & 17: The Lord is my strenth and my song; he has given me victory! I will not die; instead I will live to tell what the Lord has done. From the comments of others and in reading your blog: you are a beautiful women--blessings to you and your family.

Joey said...

I will be praying...