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.’
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.
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.
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!