In His Words

MDA waterfall

Today, we'll hear from David. As he moves through this chapter of his life, we'll hear from him as he shares his experience from his body, mind and soul.

Can’t taste it right now, but he knows it’s yummy 

There is no way to express my gratitude for where I find myself today.

When I drive to MD Anderson each morning, I see the vastness of the city block sized buildings, the sky bridges from one enormous hospital area to another. 

The entire operation is a highly organized group of thousands of professionals focussed on their patients. Communications is what they are known for at MDA, and they have taken it to a stratospheric level of excellence! They make the patients the priority in everything they do and coordinate everything toward that end. That story is another blog and a half to come, but back to my appreciation for being here. 

1/2 of one of the sky bridges

As I walk into the building I see patients of every type. There are more types and stages of cancer than there are leaves on a tree. I see people with amputated limbs, horseshoe shaped scars from head surgeries, tumors of every size and color, indentations and cavities where healthy bones once were. All of them are being assisted out of their cars and into the hospital. In the hallways I see them pushed in wheelchairs by their caregivers, pushed in their hospital beds by nurses back to get radiation, and countless just sitting and waiting to be seen. Most of them are dozing, having briefly given in to the overwhelming fatigue that comes with their treatments. I am so lucky to still be up and ambulatory early on, but I see the future, and respect every one of them! They have come for the medicines, expertise, surgeries, therapies and most importantly, the hope they need.  

Every day I think how lucky I am to be here, to be fortunate enough to have doctors of this skill level, with state of the art equipment and so many people focussed on my needs. Before my first visit, I was already hearing the accolades of MDA. When my sinus surgeon gave me the news about my SNUC, he told me three hospitals that he would recommend. He laid them out as objectively as possible without preference. That is, until I said MDAnderson would be my choice. That’s when he said, that’s what he would pick for himself or his family. He went on to tell me that where you go initially for your cancer treatment is THE critical decision when trying to increase your chances of fighting cancer to a successful outcome.  This was reinforced my first day at MDA when riding up the elevator with a gentleman whose whole neck was swollen and wrapped in dressings. He told me that he had seen his doctors in New York and they had treated him initially for prostate cancer with surgery and radiation. He “recovered” only to have the cancer come back with a vengeance 11 months later. He said he was now here to see if he can hopefully be “cured” more permanently. He said how much he regretted not having come to Houston first. This was a casual two minute elevator conversation between complete strangers, with nothing in common but being cancer patients, looking for hope.

Welcome to day one! 

On day two, another patient struck up a conversation about his first treatments in Florida. Telling me that immediately after surgery his doctors suggested he get to MD Anderson to continue his treatments What, no three choices to pick from?? Regardless, we are all in the right place now. 

So the way MDA has embodied their care for their patients is to be their advocate. They schedule all the tests, all the specialists, the labs and follow-ups for the patient. I don’t have to call the DDS and make an appointment to get my teeth checked out, schedule a follow-up to get my radiation mouthpiece made, then schedule a third visit to get the final fitting. I’m not scheduling visits to the optometrist for my baseline review, or calling my oncologist to see when I can start my visits. Everything at MDA is under one hood, so to speak. They schedule everything from their central scheduling and notify patients on their online portal “MyChart”. All the surveys, questionnaires and forms are online. Changes to schedules and appointments are automated and updated continually. 

This makes everything for the patients simple. Results from tests are shared with all the physicians at once. All billing comes through one channel along with insurance, pre-authorizations and payments. Easy peasy!

In my first week I saw DDS Oncology, Radiological Oncologist, Hematologist, Chemotherapist, Patient Advocacy Representatives and my primary Oncologist Dr. Hanna (who actually is the one who “Wrote the book” on my rare cancer). 

Dr Hanna, Super Star

This would have taken me weeks to coordinate all the visits but MDA had everything done in  four days.

The second third and fourth reasons I’m so lucky to be where I am is that my cancer was found so early, tested thoroughly, and in the hands of superior doctors. It was just some congestion that would not clear up. Again fortunately or luckily, Cyndi works for a group of talented ENT doctors who got me in immediately to check things out! 

Handsome Dr Pahlavan

Dr Shane Pahlavan did my surgery, saw what was going on with my polyp, and had it sent for biopsy. It was such a rare cancer that he had them double then triple check the test results! It was a blessing that Dr. P had worked with Dr. Hanna when he was in training and did some of his residency at MDA. So Dr. Hanna helped train Dr. Pahlavan, whose ENT group hired my wife, who’s husband has a super rare cancer that just happens to be Dr. Hanna’s specialty. Coincidence...... uh... nope!

 

My fifth and most important reason I’m so lucky to be where I am is Cyndi. Cyndi has dedicated herself to taking care of me and help me through this test. I tease that I have my own personal nurse, but it’s no joke, she’s the real deal. We are working on communicating better about what we need, what we expect and how we want to live through this life test. Cyndi was diagnosed with Polycythemia Vera six months ago and had been wrestling with some of the symptoms for several years before she was officially “labeled” with her cancer (her cancer-versary was 8/20). Now she is taking care of me and I’m trying to figure out how to be prepared when it is my time to help her! As she says “You just don’t get it, until you get it.” Now that we both have it, we are finding our way together. We will spend our 30th wedding anniversary together at MDA on February 14th! How can I get any luckier than that?

The train about to hit me, or the light at the end
of the tunnel. Let’s go with the light.
Yes, definitely the light we are heading towards.