Cleveland and the King

Recommended by many people in the last two weeks, my mom, sister, daughter and I embarked on a road trip to Cleveland this past Thursday to see an oncologist who specializes in Ewing’s sarcoma at Cleveland Clinic –
Dr. Peter Anderson.

I was lucky enough to receive his contact information from an online support group and sent an email to him last Saturday – truly not expecting a response until Monday morning.
I received a reply on Saturday evening, followed by two more emails on Easter Sunday!
I knew that this doctor was the real deal and truly wanted to assist in creating a plan that would work for my particular case.  He created a quick overview sheet, asking me to fill in the blanks with past medications, etc. – even asking for my daughter’s name!  Going out on a major limb, I asked him if he would be able to see me in his office soon, prior to the start of my treatment.
Talk about prompt – he added me on to his schedule for Friday, April 1!

What was I hoping for from this visit?  I was hoping for more treatment options, a bit more promising than what I have received thus far.  I was hoping for somewhat of an answer as to how to rid my body of this disease – whether that comes with traditional treatment or alternative methods.  I was hoping for hope.

My body is strong ~ and my will to fight is strong.  Nothing can take that away, not even 4 cancer diagnoses.

Our road trip began at 9:30 on Thursday morning, leaving from Springfield.  It took approximately 8 hours to get to Cleveland – adding in food and restroom breaks, plus the hour we lost due to the time change, we arrived right at supper time.

We woke up on Friday morning – at nearly noon!  We visited the Rock & Roll Hall of Fame, something that I definitely wanted to do while we were out there.  My sister had been there once before, so she pointed out the best displays.  I am a huge Elvis fan, so it was so much fun to see the display about him.  It was really interesting to see where the roots of rock and roll began and how far it has come in all these years.

Unfortunately, I was dealing with a lot of pain during our visit, so I had to sit down quite a bit.  We returned to our hotel and had some time to relax before my mom and I headed over to the Cleveland Clinic.

The building was very large, but it was easy to find where we needed to go.  Dr. Anderson had scheduled me as his last patient of the day, and he reiterated to us that we did not have to rush through anything.  It was nice to know that we wouldn’t be rushed through a very important appointment after traveling such a long distance to see him.

Dr. Anderson said that the chemotherapy regimen that has been proposed by my Springfield team is a good place to start.  However, he has no intention of stopping there.  He has had much success in treating adults with Ewing’s sarcoma and I am quite hopeful now that this is able to be beat!  He does want to avoid removing the left lung, because the fear is that it could return in the right lung and then where would we be?

His goal is to shrink the tumors and then conduct an exploratory surgery, in which he wants the Oncology surgeons to participate – then follow up with a vaccine in which he has developed to treat the residual tumor.  The initial shrinkage will be monitored by routine chest X-rays, and the drugs he is proposing have manageable side effects.

He suggested a Genome study in which they look at potential gene mutations as a root cause of the cancer.  His team received a grant that allows 50 patients to participate, free of cost.  I gladly consented to this study and received a blood draw, all that it took for them to obtain results.  We won’t know results from this until the end of the year; they won’t finish collecting their data until August 2016.  Should my results come back showing a gene mutation, it would be recommended that I meet with a genetic counselor and a plan would be established from there.  All in all, I walked away from the appointment feeling very confident about the options that he had provided to us.

Chemotherapy will begin on April 4, with 5 days of infusion and 2 weeks off.  The tentative plan is to do a chest X-ray following every couple of sessions to determine whether the chemo is working and revisit Dr. Anderson in June or July.

We’ll head back to Illinois today – and we’re heading home with hope in our hearts –
with a plan in motion and goals to work toward.

I am so blessed to have been able to meet with Dr. Anderson, a man very skilled in managing and treating Ewing’s sarcoma – personalizing a plan for each of his patients.

Knowing that there are more than just two options makes my family smile a little wider tonight.
Having a positive attitude from the start has not always been easy, but my visit to Cleveland has proved to be quite enlightening.

Armed with hope, I’m ready to take this on!