Advocate for Yourself!!

As anyone who knows me knows, I am a big proponent of clinical trials. But, recent events make this post one that I feel needs to be written.

Bud (in the white shirt) – just a month or so before he passed
away. Friends and family met for lunch.

On August 30, 2017, my friend Bud Bivens passed away from stage 4 non-small cell lung cancer. He leaves behind a bevy of great friends and loving family members. He will be sorely missed.

Bud’s cancer was not diagnosed until late June of 2017. Only a week or so before, he had celebrated his 68th birthday. Bud was active. He loved to bowl and to do other activities that kept him moving.

He felt good and seemed strong, but he had developed a persistent cough. He tried to get in to see his primary care physician  (PCP), but she was too busy to make time to see him. Her office suggested that he go to Urgent Care if his cough persisted. It did.

At Urgent Care, an x-ray was immediately ordered and Bud was told to get to ER right away. It was evident that he had late stage lung cancer and needed more help than could be provided by Urgent Care.

Bud was admitted to the hospital. A series of scans and tests were run. Because he was on blood thinnners, the biopsy was delayed for a week. Once the biopsy was done, Bud requested that they test the tissue for genetic mutations.

Treatment could depend on what was found through the mutation testing. If he had a high PDL-1 count, immunotherapy might be a good option. If he had EGFR, ALK, KRAS or other mutations, targeted therapy drugs could be more effective and less harsh than traditional chemotherapy.

Unfortunately, mutation testing takes a couple of weeks. However, while medical professionals waited on the results, Bud was sent to radiation to have several small tumors eradicated from his brain, using a gamma knife.

Clinical Trial … or Not …

I had had such phenomenal results from the clinical trial I had joined 4 years ago that we all were excited and hopeful that Bud could also get into a trial. I did and still do believe that patients get the latest and greatest that research has to offer when participating in a trial.

I also believe that the level of care and attention a patient gets when in a trial is magnified. I loved being in the trial I was in and would readily join another.

However, when waiting on a trial allows your fast-spreading cancer to continue sprialing out of control, a trial is not the best option. Your best option is to begin treatment NOW.

Bud’s treatment was delayed six weeks while all of the trial requirements were being met, such as being cleared by his cardiologist,  waiting on results from the mutation testing, and allowing his body to rid itself of blood thinners, etc.

Those of us who knew and loved Bud were devastated to watch him go from a virile man to one dependent on oxygen in just a matter of a few weeks. He could barely speak because his cough had gotten so bad. His movements were limited because his oxygen levels tanked with the slightest amount of exertion. It was clear to us that Bud was going downhill way too fast.

And, yet, the doctors drug their feet. Weeks passed with nothing being done. Weeks that saw Bud’s health decline more and more.

Finally, a trip to the emergency room resulted in Bud once again being admitted into the hospital. He had still been given nothing to combat his cancer. His doctor was still waiting around to try to get him into a clinical trial.

Some of us worried that this trip to the hospital was the last one Bud would take. His health was continuing to decline. Day by day, even those with him every day could see that he was failing. He was losing weight, couldn’t eat, and the cough was relentless.

A forthright doctor told Bud that if they couldn’t get his oxygen levels up to the high 80s, or preferably, into the 90s, they would have to intubate. Once intubated, the expectation was that it would fall to his family to decide whether and when to pull the plug on their dad’s life.

The idea of putting his family through that terrified Bud. He never showed much fear in the face of his disease, but making his family face such decisions was the one thing that I saw bring tears to his eyes.

Chemotherapy … Treatment at long last

While in ICU, the doctors decided Bud might have pneumonia hiding behind his tumors so they started heavy duty antibiotics. The antibiotics meant that Bud was no longer going to be eligible for the clinical trial so, at long last, chemotherapy was begun.

Bud rallied. Whether the chemo or antibiotics or both worked, we don’t know. But, Bud improved enough so that he was able to go back home. We were all elated. There was still hope.

Unfortunately,  he wasn’t home for long. His oxygen levels tanked. Even a level of 70 was a dream. Somehow, he managed to survive it dropping down into the 40s. When, despite valiant efforts, it couldn’t be brought up to a sustainable level,  Bud made his last trip to ER and, subsequently, to ICU.

He refused intubation. He was given morphine in increasing amounts. He passed away peacefully on August 30, 2017, surrounded by his loved ones. Bud will be greatly missed by many of us.

His brief battle against lung cancer makes me ready to push even harder to make people aware. First, if you have shortness of breath or a persistent cough, get it checked out. Sooner rather than later.

And, the point of this blog entry … we will never know if Bud’s life could have been extended or saved if doctors hadn’t drug their feet. It seems his oncologist was more interested in getting him into a clinical trial than into treating him. It seems he was viewed more as a potential subject than as a man whose cancer was quickly ravishing his body.

I hope through this blog entry readers can see that those who cared about Bud could see him declining day by day, even hour by hour. And yet, his doctor told him that she was shocked by how aggressive his cancer was. She had no idea that it was taking over his lungs so quickly.

Was she blinded to it because all she saw was a subject for her clinical trial? I hope not, but I am fearful that’s the case.

If you are a patient or a caregiver, please. Do not be patient. Do not rely on your doctor or medical team to know or do what is best. You and your family and friends may not be trained in medicine, but may see things in a more realistic way. If things don’t seem right or don’t seem to be moving fast enough or in the right direction, make waves. Make BIG waves. If one doesn’t listen, move to the next.

Again, none of us know if Bud’s life could have been extended if they would have started treatment within a week or two instead of after 6 weeks. But,  I will always believe more, much more, could have been done for him.

His experiences have reiterated to me that I care more about what happens to me than doctors do. I know how I feel and I  know if something doesn’t seem right. And, I won’t sit idly by while doctors wait for who knows what.

I hope you won’t either.

RIP, Bud. You are missed.

 

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