Kevinʼs Cancer Journey as of 9-27-2014
It was spring 2013 when I first noticed a small lump at the base of my right calf. I didnʼt think too much about it but knew I should have it checked out so a few weeks later I did just that with my doctor in Bryan. They did X-rays and other types of tests but didnʼt know exactly what it was. They decided it would be best to remove it so surgery was scheduled shortly thereafter. I suppose they got to thinking about it and decided to consult a cancer doctor. They quickly told my doctor to cancel the surgery and to do a biopsy because all signs seemed to point to Sarcoma cancer. Sure enough thatʼs exactly what it was. It seemed impossible. Cancer? Seriously? If you know me you probably know our familyʼs history when it comes to this terrible disease. Mom, dad and numerous aunts and uncles have tragically been taken from it.
I promptly scheduled appointments in Houston at MD Anderson Cancer Institute. They have one of the top if not the #1 sarcoma cancer hospital in the world. Everything was moving so fast that Jennifer and I tried our best not to get too overwhelmed by it all. When I got there they didnʼt have a doctor to see me so I got to see the doctor that started the sarcoma unit at MD Anderson. I knew I was in good hands. The doctors there all meet to discuss the best course of action for each patient. He told me they discussed my case for hours and determined I needed to start on chemo right away. Thereʼs approximately 30 different types of sarcoma and mine is called Spindle Cell Sarcoma and it was growing very rapidly.
The chemo ʻcocktailʼ they put me on is absolutely the hardest and toughest chemo treatment they offer. The maximum rounds you can take in a lifetime are 6 because itʼs so devastating to your heart, lungs, liver, kidneys, bladder, etc. Their #1 goal at that point was to stop the tumor from growing and contain it so that it doesnʼt spread. When it does spread the majority of the time it goes to the lungs. Once it gets into the lungs itʼs very hard to treat.
I can truly say that the chemo was the hardest thing Iʼve EVER been through in my entire life. I didnʼt think Iʼd be able to finish the last 2 rounds because I thought for sure the chemo was going to be what took my life, thatʼs how hard it was. My doctor told me that I would be ok and that I had to do the last 2 rounds if there was any hope of getting rid of the tumor and any cancer cells that might be in other places in my body. I successfully finished and started resting up for the next phase.....radiation. Once I was well enough from the chemo I had to make a daily trip to Houston Mon-Fri to get my radiation treatments.
Once I was rested up enough after radiation I underwent surgery to remove the tumor and the tissue around it in hopes they got it all. I had to get skin graphs and that was actually the hardest part to heal. Iʼm still healing from that and itʼs been months since the surgery.
I would go to Houston regularly for check ups and blood tests, scans, etc. In the summer 2014 after finishing all the planned treatments my doctor was happy with the results. According to the last scans he couldn't see anything in my leg where the original cancer was and nothing in my lungs either and he felt 90% or better that it was gone. YAY! Iʼm cured.
I started feeling better and better and very hopeful this terrible journey was over. I was still quite fatigued but didnʼt give it much thought except that Iʼm still healing from everything my body has gone through over the past year.
On Thursday Sept 18, 2014 I went back to Houston for my regular checkup expecting it to go well and get good news. However the doctor had some news I certainly wasnʼt expecting. It was back! And itʼs in my lungs. Four tumors! 3 are pretty small but 1 is fairly large considering just a few short months ago there was nothing visible on my scans. I was in shock to say the least. So the doctor and I had a serious one on one conversation. I needed to know the truth no matter how hard it might be to hear. He told me that we could get started on chemo again. The good news about that is that itʼs not nearly as horrible as the first cocktail I took but the bad news is that only about 20% of people respond to it. Iʼm not liking those odds so I asked him if there was anything else that I could do or take to up those odds. He mentioned surgery as another option then he mentioned that there was a clinical trial going on or about to start for a new drug they are testing. This new drug could potentially up the odds quite a bit. He thought Iʼd be good candidate for it so they immediately started working with my insurance company to see if they would pay for the drug. Approximately a week later we find out the insurance company will NOT pay for me to take it. Another devastating thing to hear. The drug is called Pazopanib and after doing some research to find out a little more about it I noticed on several websites that the monthly cost is approximately $6,595. Wow! Not exactly in our budget.
Next steps are to get started on the normal chemo treatment and I can take them in Bryan which is good. I will also be talking to the doctor about surgery and any other options I might be able to consider. Iʼll have to go to Houston for regular doctor appts, scans, X-rays, etc but itʼll be easier on us being able to do the actual treatments in Bryan.
Weʼve been so fortunate to have wonderful and supportive friends and family to help us through the journey so far. Everyoneʼs thoughts and prayers are so appreciated and with Godʼs helping hands weʼll stay strong and live every day to itʼs fullest!
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