“With the first selection in the 2016 cancer killing draft, Steven Rick selects…”
No pressure, you’re just picking the oncologist that will give you the best chance at reducing the amount of cancer in your body and, as a result, gives you your only shot at possible survival. Oh, and in case you haven’t looked up the statistics on Google yet, the five-year survival rate is listed at 14%…so even the best doctor in Chicagoland is probably only increasing your chance at living long enough to see your daughters enter middle school to a 1 in 5 shot. FML. Better yet…F*ck You, Cancer!
So, the question becomes, where do you even start in selecting the doctor that will give you the best chance at a 20% 5-year survival rate? Assuming you’re going to set up consultations with multiple oncologists, what questions do you even ask to help narrow the field? We started where most people begin…close to home. Our local hospital has a cancer specialty center. Our first consultation took place about 22 hours after diagnosis, meaning we went into our first appointment mostly naive and completely scared shitless. That said, it was a pleasant experience. Our local oncologist was kind, knowledgeable, and interested in beating my cancer. He referenced a podcast he listened to earlier that morning that discussed the latest treatments in metastatic melanoma.
Let’s pause for reflection. If you were in my shoes, would you trust your life to a doctor that learned how to treat your cancer on his drive to work that morning? Neither would I.
And so, the wife and I spent the next 24 hours researching every cancer (specifically, melanoma) specialist within 100 miles. It was a Saturday which meant that none of the offices were open, but we still called and emailed any university or cancer center that had a melanoma specialist and requested a consultation. My wife had a slogan, “leave no stone unturned”. Holy cow…there were a lot of stones. And now it was time for me to grow a pair.
Most places couldn’t get us in for at least a week…and unfortunately, my symptoms were getting worse by the day. We scheduled appointments as they became available, hoping to find the oncology team that would offer us the treatment option we couldn’t refuse (even if we didn’t know quite what that meant, yet). Meanwhile, friends and family constantly sent us recommendations on Facebook…”check this doctor out”, “we had a bad experience at this place”, “our friend was cured by this doctor”…half the time the recommendations contradicted one another, leaving us confused as to whether we should explore that option. And we were still only talking about the options in the Chicagoland area. Furthermore, many people recommended cancer treatment centers around the United States: Mayo Clinic (Rochester, MN), MD Anderson (Houston, TX), NIH (Bethesda, MD)…so many options, so little time.
So, the wife and I went on the local tour, scheduling consultations with every melanoma specialist and research facility that would see us in the next two weeks. Our second appointment introduced us to a man by the name of Dr. Jon Richards. More on him (and his team) later on in this blog post.
One thing we haven’t discussed yet is the difference between common, FDA-approved treatments and Clinical Trials (where research centers offer fully-funded experimental treatments -or combinations or treatments – in order to determine the effectiveness of new drugs…in exchange for you being a human guinea pig). Sorry, that’s not fair to characterize Clinical Trials in a negative light as they offer many potential benefits…and generally Clinical Trials are what ultimately lead to FDA approval. Participants in Clinical Trials are offered access to promising new treatments not available outside the CT-setting, participants are generally monitored more frequently (thus, safer), and the drugs used for treatment are often cost-free to the person exposed to the trial. Also, Clinical Trial participation contributes to the collective intelligence of cancer research…which is vital to our understanding of how to improve medical care for those diagnosed with cancer in the future. All good things.
My opinion of clinical trials rests solely on my personal experiences during the ‘recruiting’ process. The college/university tour offered me a glimpse of what it must be like to be a blue chip athlete (minus the bags of cash and other incentives – allegedly). You see, it turns out that being an otherwise healthy (ignore that thing called cancer), under-40-years-old person is an attractive trait in the Clinical Trial community. I couldn’t help but feel like a piece of meat…university oncologists viewed me as a positive outcome (or at least a higher probability of being a positive outcome) that would make their research look good. Okay, so I have no proof that is what they were actually thinking…but that’s how I felt — and I’ve always been a firm believer in “perception is reality”. Do you know how many times I heard “you’d be a great candidate for our clinical trial”? Now for the sickening part — those oncologists that said I would be a great candidate never even looked at my scans (x-rays, brain MRI, CT-scan, PET-scan). They hadn’t bothered to get to know MY cancer story. My wife, who calls herself the pack mule, brought every single scan and report to each of our consultations — and yet, we were told we were great candidates for whichever Clinical Trial there were invested in because I wasn’t a 75-year-old, lifelong smoker with diabetes.
Now, you may criticize me for being too harsh on the research community…after all, I have already admitted that I have no proof of their dastardly intentions. But I will tell you, and my wife will attest, that there was a different feeling in consultations with universities as opposed to someone like Dr. Jon Richards (I told you he was coming back into the story). We left a consultation from a highly reputable institution (for sake of the story, we’ll call it the University of Schmicago) and both of us started crying. During lunch after the appointment, my wife tried to describe how she felt…she explained the pain, the loss of hope, and the trouble she had catching her breath. I said, “Cindy, you now know what it’s like to be kicked in the balls. The University of Schmicago just kicked us in the cookies.”
Now, to be fair, there was nothing that the University of Schmicago did that was inaccurate or unfair. They were just extremely honest and data-driven, explaining each potential treatment and any associated statistics (“with this treatment, you have a 20% chance of success and a 45% chance of potential negative outcomes”), something we did not want to hear…over and over and over. Okay, we get it, cancer sucks and there’s a higher probability that I won’t survive while possibly experiencing painful and potentially-deadly side effects. You win, University of Schmicago, I’m officially defeated.
We had a much better experience at another university (let’s call it, Schmorthwestern), where they didn’t kick us in the balls…or any other painful orifice, for that matter. In fact, they intrigued us by offering a completely different treatment path. In addition, they had a Clinical Trial that provided benefits with fewer side effects. Hmmmm, finally something to think about. I could tell my wife (by the way, she and I are the only ones that can call her a pack mule…attempt to do so at your own risk) was falling in love with Schmorthwestern. Their presentation was great. They had a team of doctors that met monthly to discuss their cancer patients. They were, after all, Schmorthwestern, and could offer some of the most up-to-date treatments and technology on the planet. She felt safe. She felt supported. I, however, felt like a statistic. Again. I was told I was a great candidate for any of their clinical trials…where have I heard that before?
One place I did not hear that was the office of Dr. Jon Richards. Okay, to end the suspense, Dr. Richards is MY doctor. He has been my doctor since the moment I met him…I just didn’t know that yet and to be fair to my wife, we still had a lot of stones to turn over. Dr. Richards saw me at my worst…he saw the guy that was three inches shorter, hunched over coughing up a lung. He saw the lymph nodes sticking out of my neck, my skin pale and sweaty. He saw me at my worst…and it wasn’t a pretty sight. We met him on a Friday and I’m still not convinced he didn’t think I was going to make it through the weekend.
The first time he walked into the office, he held my hand and he said “we’re going to beat this and my goal is to have you walk your daughters down the aisle”. Now, that’s a novel concept, a doctor that realizes I’m more than just my cancer diagnosis…that I actually care more about my daughters than myself…that I’m still a human being and not just a potential statistic. Dr. Richards took my wife and I into another room where we reviewed my PET-scan together. He answered questions…and if you know my wife, you can be sure that she had an arsenal of questions ready to ask. He spoke to us with respect, yet explained things in a way that was easily understood (gotta love a good analogy!). When asked about his plans for my treatment, he started with “If you were my brother, I would…” — signed, sealed, delivered. Dr. Jon Richards was my doctor since that initial consultation. I just hadn’t admitted it yet.
We still had consultations set up (University of Schmicago, Schrmorthwestern, etc.) and we didn’t feel guilty because Dr. Richards was going to be out of town for a week. He actually had us schedule an appointment with his associate, Dr. Sigrun Hallmeyer, for the week he was gone. Wow! If I wasn’t sold on Richards, Dr. Hallmeyer was the icing on the cake. Aggressive, warm, passionate, caring…I had found my team. And the best part, their second office (main office was next to Lutheran General Hospital) is located in an unsuspecting strip mall in Niles, Illinois. Right next to a ‘Wig World’. Yes, that’s a store that sells wigs. My cancer treatments take place in a strip mall…and I wouldn’t have it any other way.
My wife said “leave no stone unturned”. We turned over multiple stones and ended up in a suburban strip mall. Many people, myself included, often refer to their fight against cancer as a battle…or better yet, a war. When this process started, I had no idea I’d be fighting this war using guerrilla tactics…hiding in trenches…attacking the enemy (cancer) from the unsuspecting safety of a ‘Wig World’.