We humans are both miracles and catastrophes.
Weep for this world and gasp for it.  
Insist on Joy, but be honest about death and its place in the task of living.
Death - the looming fact of it, its finality and clarifying power,
Calls us to attention and wakes us up to life.
Wake, and pay attention to our mortality,
To the precise ways in which beauty cuts through us.
Pay attention to the softness of skin and the majesty of hands and feet.
Attention - real, sustained, unflinching attention, is what this life, with its disasters and delights, demands of you.
It is only by keeping death nearby that one can truly live.

-Kathrine Rundell
Excerpts from:  What John Donne Knew About Death Can Teach Us a Lot About Life
NYT 9/10/22

“WE DON’T TREAT DISEASES, WE TREAT PEOPLE,
THE NEEDS OF THE PATIENT COME FIRST”

Sometimes, often in the most critical times,
The Art of Medicine can trump the Science of Medicine.
Think Creatively, Think Proactively, & Advocate for Yourself

If we learned anything from the Pandemic, it is that all Medical Professionals, are precious humans.

It is mind blowing to me, to see the degree to which these professionals dedicate themselves, to making us better - every day, sometimes for a lifetime.  I have inexpressible gratitude for people who dedicate their lives to this. They are the angels of our society.

I believe the vast majority of Doctors are well intended and generous. But as a patient what I have learned is it is critical to remember we are all just human.  They bring their own histories, dispositions, philosophies to their craft. This is why it is important in your own health, to consult as many medical professionals as you can.

I have thought a lot about the irony of this happening to me at this moment, on this particular part of my body. Maybe sometime I will elaborate on this…

On April 12, 2022, about a month after noticing a lesion on the underneath section of my tongue, I underwent a partial lateral glossectomy and neck dissection to remove a marble-sized cancerous tumor from my tongue and remove adjacent suspicious lymph nodes from my neck to assess possible metastatic disease. It was a complex and hard surgery to go through, because of the sensitive nature of the mouth, and its critical function of breathing, hydration, swallowing and communicating. But I awoke feeling grateful as I never lost the ability to breathe or swallow. I was placed with a feeding tube for four days and a drain tube for 20, and had 50 staples in my neck. But I was fortunate to recover slowly and I went home on day 5. I then just needed to recover and wait for the pathology report that would determine my spread and stage.

This was the longest wait of my life - and some of my darkest nights… I have never in my life wanted anything more, than a positive pathology report. I just kept thinking about all the things I still wanted to do and all the things I still wanted to see…. and finally after eleven long days and nights, counting the hours and minute steps toward healing, I was given this most precious gift: My skilled surgeon was able to remove the tumor with 100% clear margins and there was zero spread in Any of the 59 nodes. I felt myself coming back into the light, into the land of the living again. I felt profoundly grateful and fortunate, knowing well, that some that face this and worse, do not ever get this gift, or have this second chance.

This experience has changed me for the better, in yet unclear and inexpressible ways. But the best way to summarize it today is, I now just feel constant and immense gratitude, respect and peace.

After surgery I realized right away that the left side of my tongue was “dead” - no feeling or taste from nerve damage. But, the my precious right half of my mouth was okay! There I could taste, process and swallow. Survive.

However, my team of doctors and the entire Colorado Multidisciplinary Tumor Board still recommended I go through six weeks of post operative radiation therapy to my mouth. It was honestly terrifying to me, that my beleaguered tongue, still wounded stitched and swollen, would be healing for a month, only to undergo six weeks of daily radiation burning, even with such a positive pathology report. We found this surprising and confusing.

I was sad and scared, of what the radiation might do, to my precious patch of healthy, life preserving tissue… yet if it was being recommended by my team I would do it even if it meant going backwards again, and damaging this tissue more, after all the struggle to improve.

As I tried to accept it I found myself comparing it to being blind in one eye. As sad is it would be, to be left with only one eye, imagine the difference to have the ability to see out of one! Imagine being told you needed to burn with radiation, your healthy eye, just to make sure… However, if you lose your second eye, you can still survive without sight. You cannot, however, survive, without a mouth.

I was, and continue to be, profoundly grateful for my precarious, life-saving pocket of healthy mouth.

Leukoplakia.

I had never heard this word before. But it is a word that every person should know. I have spent the past several months tilting my head and squinting, wondering why in the world there is not a public health awareness campaign for this, like all the others? Why had I never heard of this before? Especially when it is so simple for everyone to look into their own mouth?

Leukoplakia is white tissue in the mouth - like scarring - that is a precursor to oral cancer. I hope to encourage all to watch their own mouths for this sign.

It is most commonly caused by Tobacco smoking or chewing, and over consumption of alcohol. However, tobacco has never once been close to my mouth, and I don’t drink alcohol to excess - so I was told that it is extremely unlikely that I would have developed a tumor underneath my tongue without these risk factors, so this remains a mystery. It could be genetic, or some other yet unknown factor, or simply bad luck. This, along with the size of my tumor (Depth of Invasion) which was right on the borderline at 10mm - a threshold at which they normally recommend Radiation is one main reason my doctors were in agreement that I should have Radiation, they were understandably stumped, and spooked, by my “X Factor” Why did I develop this with no contact with substances that normally cause it?

I knew this was my plan as they had prepared me for it prior to Surgery, but after surgery and initial recovery, I was ultimately left with about two weeks to just wait and think…until Radiation could begin... And this, is when it hit me:

Colorado is only one state.

In this time sensitive two weeks of just waiting, I figured I’d do whatever I could to see if more good minds in reputable cancer treatment centers around the country would be willing to weigh in on my case. My doctors knew and respected that I was doing this. I expected if I could find others to weigh in, that they would likely simply corroborate this consensus and just give me even more confidence in this recommended path ahead. This alone would have been incredibly helpful.

I did some research and contacted Johns Hopkins, MD Anderson, and Mayo Clinic. Only Mayo recognized the time sensitive nature and made it feasible.

This in itself is something I am in awe of… (See my first blog post 10/30/22 for more on this)

Mayo is known for their relatively new “Proton Radiation Therapy” designed to spare suffering and healthy tissues, but it is still severe. We thought the discussion would be focused on proton vs traditional RT. But it wasn’t…

Sometimes, often in the most critical times, the Art of Medicine can trump the Science of Medicine.

This is the message I want people to hear and learn. Talk to many, get as many to weigh in on your circumstances as you can, to optimally understand your options. I had the most important conversation of my life Thursday May 12, with a young Radiation Oncologist at Mayo Clinic named Dr Scott Lester.

He had studied all of my statistics - my CT & PET scans, pathology and surgical reports. He started the conversation by saying:

“Radiation Therapy to the tongue is one of the hardest things a person can go through in all of medicine.
It is a very challenging course of therapy that is permanent, life altering and could shorten your life in ways that is difficult to measure.”

His opinion was that my case did NOT rise to the level of warranting the damage to the mouth that is unavoidable, certain and permanent, with radiation. He proceeded to simply help me understand with clarity, what my current cure was, and what more Radiation Therapy could do for me, and what it couldn’t do for me, and he impressed upon me that my course ahead was a decision only I could make.

He reminded me that it is basically a personal Philosophical choice, based on risk and reward and consequences, that neither my husband, or my kids, or my parents could make. Only me. He reminded me that every person faced with the exact same circumstances may make difference decisions, and that no decision is right or wrong.

And because I personally believe I would rather live well than live long, once I had this clarity, this choice was very easy for me, and truly, a Gift.

I have been stunned every single day since, by how much he profoundly and positively affected my life and future going forward. I cannot get my mind wrapped around the gift he gave me. I believe he saved me from needless suffering and an uncertain future.

His sole focus was on my individual human experience, and giving me the risk and reward equation considering my particular case. This in my mind, was the difference. This, was the ART of his practice of Medicine.

The Needs of the Patient, Come First.

The next day, Dr Lester discussed my case with my surgeon, and he told him he felt the surgery was “clean” and was supportive of any path I choose. They agreed my case was not clear cut, and that they too see the rationale for observation. Four of his five Mayo colleagues also agree with Observation. This was very meaningful to me also.

I have never wanted anything more in my life, than that good pathology report. I am so mindful of how many want the same thing and are not so fortunate. I feel like I won the lottery to have gotten it, and from this day forward I didn’t need to do anything further but heal, watch and live.

By June, I honestly felt whole - and profoundly grateful and fortunate - Reborn… With an entirely more peaceful, gentler, more forgiving, accepting and grateful outlook - every day since.

So this is my story. I offer it in hopes that others can learn from my path and help themselves also. I want to encourage others to be vigilant with their own health - think creatively and proactively - and always be your own advocate. Talk to as many medical professionals as you can until you fully and clearly understand your situation and your own personal options.