Over the last three days, I have kept a journal to chronicle my latest visit to Cleveland. And over these past few days, many analogies and phrases have been spoken that stuck out to me.
‘A lot of miles left on these tires.’
‘It’s all we’ve got.’
‘We have to do things for someone, not to them.’
‘It’s like painting the garage door.
You can scrape away at it, but you can’t get all of it off
without totally removing it.’
‘There’s bad luck and there’s bad planning.
This is bad luck.
We don’t do bad planning.’
‘W.I.T. Whatever It Takes.’
8/10/16
The 3rd trip to Cleveland has begun. We’re a few hours away from our hotel as I write this. Mom and I left out at 10 this morning, leaving Abbie in the care of my dad and sisters. I did not handle that well – saying goodbye to her – since this could potentially be the longest amount of time that I’ve been away from her.
Michael stayed home and will continue to work as I keep him updated. As of right now, I just have a PET/CT scan scheduled for Thursday and a results review with the Ewing’s specialist, Dr. Anderson, on Friday. If it is decided to proceed with surgery at this time, Michael will join me in Cleveland.
8/11/16
Today felt a bit like a whirlwind. I woke up knowing the time of one of my scans, but nothing else. I was due to have at least 2-3 scans. With 46 buildings on Cleveland Clinic’s campus, I hustled around to a few of them by the time the work day came to an end. The gals in Dr. Anderson’s office were amazing! They worked diligently to get me in to the tests that I needed. What had happened was that my doctor thought I wasn’t coming until next week, so things hadn’t been scheduled prior to my arrival. By the end of day today, I had had a PET/CT scan, chest X-ray and a pulmonary function test. I’ll meet with Dr. Anderson tomorrow to review those results.
8/12/16
The news today has not been what I had hoped. The current chemo regimen isn’t working and the tumors are growing. Though the silver lining is very dim, they are only growing by millimeters and it is still just contained to the left lung lining.
However, the medicine part of options is quickly running out.
Dr. Anderson has recommended two last resort chemotherapies to try before sending me to clinical trials.
I will begin taking a daily pill called Pazopinab. It inhibits tumor growth by targeting proteins found on the surface of cancer cells, as well as targeting the blood vessels that supply oxygen to the cancer cells. By doing this, it is the hope that the cancer cells will starve and shrink.
A side effect of this medication, however, is that it will turn my hair white for the duration that I’m taking it.
If that doesn’t work, I will get an IV chemo called Trabectedin. This is a fairly new chemotherapy, designed to do the most damage to cancer cells in the resting phase of the cell cycle, before they have a chance to actively grow and divide.
What I have found admirable about Dr. Anderson in Cleveland is that he does not skirt around the truth. He is primarily a pediatric oncologist, but his specialty is Ewing’s sarcoma and he treats many adult patients – some traveling quite far to see him (myself included). He bluntly stated today that he has more confidence in surgery or a vaccine to take care of this now instead of medicine.
Fortunately, the pace of my disease is not too fast. However, if we do nothing, it would, without a doubt, speed up the tumor growth.
After my first visit with Dr. Anderson today to review results, I visited with the thoracic surgeon. He was a nice man, but very direct and to the point of how serious this type of surgery is.
Unlike the surgery I had in October 2015, where they scraped the tumors out of the lung lining, this surgery would consist of removing the entire left lung and diaphragm. The official name for this type of surgery, done a lot for patients with mesothelioma, is called an Extrapleural pneumonectomy.
The surgeon explained the risk I have going into this by having had the previous surgery.
At the microscopic level, when tissues have been cut and healed back over, things seep through the cracks (such as cancer cells). There is no chance of getting 100% of the cancer out by doing the surgery, but they would get as much as they possibly can.
And after the lung comes out, radiation would likely be done to the chest wall to remove any traces of leftover cancer.
The thoracic surgeon called this a W.I.T. operation.
Whatever. It. Takes.
And I agree.
There is so much worth fighting for in my life and I don’t want this to be the end.
I’m very blessed to have doctors that do not want this to be the end, either.
The next step now is to make a plan.
I heard it time and time again today – a plan must be in place before anything is even attempted. The surgeon said to me, “There is bad luck and there is bad planning. We don’t do bad planning.”
My case is being presented to the Ewing’s sarcoma board, as well as the Thoracic board, next week. When the time comes for this procedure, it won’t just be Dr. Anderson and the thoracic surgeon. A pulmonologist will be involved, because the surgery involves the lung. A radiation oncologist will also be involved, as well as a plastic surgeon to reconstruct the chest wall once they’ve removed everything.
Extensive testing of my heart and lungs would also need to be done prior to the surgery to make sure I can withstand a surgery like this.
Though no dates have been secured, a potential timeline of events would be a return trip to Cleveland in a week or so for additional pulmonary testing and potential surgery around the second week of September.
So for now, I will begin taking the Pazopinab and pray that it works. If my pain diminishes, that is a good sign that it’s doing its job.
To say I’m crushed would be an understatement. It doesn’t even begin to explain how I’m feeling. But I’m the type of person who needs to stay focused on what I need to do at this moment – and right now, that is beginning this new medicine and communicating with these doctors as they develop a plan.
I want them to know that I have a lot left to fight for and they are the ones who can help give me that chance.
My emotions are raw right now. I am mentally drained.
I’m better at writing my feelings down and portraying a strong outer shell, then having my break down moments in private.
The way people deal with unfortunate health news can differ in so many ways, but it is extremely important to understand that there is no right or wrong way to deal with it.
No one should ever be made to feel bad about the way that they handle something, be it publicly or privately.
I am so appreciative of the extended family that I have within my friends, my co-workers, my church family – including those who follow my blog, many whom I’ve never met.
Your thoughts and prayers sent my way mean so much to my family and I.
I will keep you updated as best I can.
In the meantime, if you feel led to help, the Festival of L.I.F.E. (Live It Fully Everyday) is a cancer fundraiser that I started to bring general cancer awareness back to Macomb.
This is the first year for it and I am thrilled about the amount of publicizing that we have already done for it; however, it would definitely not hurt to spread the word some more!
You can visit my personal page here. All of the money raised goes directly to the American Cancer Society to help individuals battling cancer.
I have personally been helped by several of the services that ACS offers – the Hope Lodge as a teenager, multiple wigs during the times I lost my hair and free lodging in Springfield during the last year of treatments, including my sister and daughter so that we didn’t have to be apart.
There is someone out there just like me, fighting for their life because of this nasty disease. In fact, there are way too many people out there like me.
I want to see this fundraiser do AMAZING things in its first year and hopefully continue on for many years to come!
Thank you again to everyone following my story and keeping me in your thoughts and prayers.
I’m not ready to throw in the towel just yet – I have a lot to fight for!
We have never met. But please know that I love you. My heart is filled with joy when I see your baby girl. My eyes fill with tears as I read your posts. But most of all, I love my sister in Christ…..you!
Sarah, you are an amazing woman and so courageous. I admire you through and through. My family and I are sending you healing thoughts and prayers.
Tammy (friend of Nessa’s)
Sending you many prayers……
You can do this Sarah….. Christ says you can do all things through him, who strengthens you! He WILL give you the STRENGTH TO do whatever it takes? I continue to pray for you everyday- your such a wonderful, amazing woman that I’m so honored to call my friend- love you❤️ Stay positive and stay strong! I’m here if you need anything!!!!
Sarah,
Your strength and faithfulness are amazing! Please remember we all are praying for you and asking God to be with you every step of this journey. Bless you. (Marna)
You are amazing Sarah!! Prayers for healing, prayers for continued strength and courage, prayers for you and your family to feel God’s love and presence throughout this journey. Love you!
You are an inspection Sarah to so many people. God has His plan for you. I pray his grace, mercy and wisdom give you peace and direction during this so difficult journey. Judy and Chuck Neal❤️❤️?
You are an inspiration not “inspection ” as my previous post. Sorry! ?
Keep fighting Sarah, I know you will. You are such an inspiration to so many. Prayers and positive thoughts will continue to be headed your way. Love, Jamie.
Sarah Joe and I are so sorry things didn’t go as we all prayed they would. We are still sending prayer for you and the family. You are one very strong Christian and I know that you will continue to be throughout this whole illness. ?
Keep fighting the fight! Prayers going up!
Praying for you, Sarah.
I know of you because I have friends that know you. There is a song that gets me through my rough health issues and thought you could feel inspired by it as well: “eye of the storm” by Ryan Stevenson. I will pray God keeps you at peace through this.
Praying for you Sarah and your family! Thanks for sharing and please feel our hugs!
Love you Sarah!! Praying for you, your whole family and all of your healthcare team!! You’re inspiring and strong!! ❤️
Yes u do u have a beautiful family who needs u keep ur love in God Manny thots prayers and hugs coming ur way stay string u can pull thru this girl with all ur love behind u pushing u
Keep up your fight! ?
My thoughts and prayers are with you Sarah, My experience with a Clinical trial drug have been very positive,So I believe it’s not a last resort but a new frontier which in my case Was surgery and injections for 2 yrs and scans every 3 months still.I feel your stress,Breathe and keep that focus.
Sarah,
When we are weak, He is strong. I know you are weary but you definitely have plenty of courage and hope to keep fighting. You and your family are in our prayers. God is using you in a mighty way. I know you would rather He had chosen someone else (although you would not put it off on any other person), but for this time, you are a testimony of his love and mercy with each new day He gives you. Days that encourage others. The W.I.T. attitude you have, is amazing, but as a mother, I totally get it! You are driven by your love for your baby girl, by your husband, your family and friends, even for strangers. Driven to live. Driven to beat the monster called cancer. Continue to give God glory through the storm. He is at work through you. Thank you for sharing.
Thx for the update but wish things were going better for you at this point. Well-I hear that the young gals are spending a lot to turn their hair gray/white-you’ll be trending in that regard. Will be sendin out those positive thoughts that the medicine does the trick. Sounds like fabulous medical care and of course support from family and friends.
Your mom and I were in school from K-high school. My name is Lydia. It’s a pleasure to know your ♡ in reading your personal blog. Our family has a personal vendetta(sp) again this disease, losing not one but three. Prayers are vital, our Savior hears u and knows the very beat of your heart. He goes before you and behind. Thank you for sharing, we will always be praying for 4 u and your loved ones.
Sarah, I’ve been praying for you, your family, and for your healing. Having gone through three types of cancer myself, I know that the Lord hears our prayers and can heal our diseases. God is faithful and just, and He’s always there to help us along the way. Thank you for sharing your thoughts and feelings with us, aND letting us know exactly what to pray for. God bless you as you continue to fight against this battle.
Luke and I have been praying for you and will continue to do so!!!! Love to you all!!!
Sending loving prayers. Sarah your strength is so inspiring. God blessing to your family. ??????????
We love you and are keeping you in our warmest thoughts and most fervent prayers …. whatever it takes!
Sarah,
God is good all the time, all the time God is good! Very surprised about your Cleveland doctor report. I know God will be in the presence and forefront of all the boards meeting to set your plans for the future. It sounds like they have YOUR concern and future in the forefront. This is just a new challenge you must unfortunately overcome again. Don’t dwell on the past. Continue to focus on the future. THIS IS NOT GOING TO GET YOU DOWN! As you have mentioned several times, you have a great support force in family, relatives, friends and people that do not even know you! God has put you here for a reason. You are a wife, mother and an inspiration to all. You have given so much to so many. You have given hope and inspiration for others. We all want to inspire you to keep positive and climb yet one more hurdle. You are amazing, courageous, an angel on earth, a rainbow, a bright and shining star and a great ambassador for Christ. Christ will strengthen you to meet another challenge. You have lots of support from everywhere. We all need your direction and leadership.
Blessings,
Jeanie told me Sunday of your news. We prayed at Emmaus, prayed this pm at crown group, & qill pray tomorrow at Hills Grove Unbinding the Gospel. You are amazing!