Melanoma and Sarcoma, Patient Care, Perspectives

How?


“You got me this far” he told me. And then making it more difficult “I trust you” he added. Perhaps these should be easy words to hear and I should be proud that I was able to do something and be commended. But it’s the other words that linger “I trust you” he repeated. As I build my relationship with patients I become part of their successes, goals and their life. I am someone that they know, have shared their hardships and deepest thoughts. I am told that it is best to have barriers and not to get involved with them. I am told that I should find ways to separate me from them.

How?

To me this responsibility, this trust is crushing. It generally sends me reeling trying to make sense of the inevitability. Perhaps now I understand the spouse and her tears. How do I comfort? With my knowledge that has failed? With my compassion that I disguise?

But it does not end there; there is a question that I have loathed. “How long do I have?”

Is there a stamp with an expiry date? Perhaps I missed it in my examinations. That is what I say out loud, angrily perhaps? Do you say you did not climb Everest when you got only half way? When you stood at the bottom of the mountain and your first words were “I cannot do this?” Now that you are half way, what should I say about the journey so far? What about the goals we reached the times we shared? Just because I could not get you to the top what should I do? That is why my patients are amazing. It’s the first statement “you got me this far” that makes me heal.

It reverberates deeply in my mind. What strikes me down to my core beyond words that I feel do not understand.

How do I say goodbye?

Mo

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12 thoughts on “How?

  1. My last words to my sister were; “I love you and I’ll see you later.” And this is the way I have made friends with the idea of my passing. After being diagnosed with LMS and doing my research on this bully of a disease I had to accept that it was possible sarcoma may take my life as I know it. It is also possible that my passage from this world may be due to some other cause. But regardless of the direct cause what I had to face and deal with was the very fact of my death, On this journey I’ve discovered that I am more than the thoughts, feelings and emotions that I experience, I am more than my body and all it’s processes and diseases. After a lot of soul-searching, struggle,doubt faith and prayer it seemed that what I had intuited twenty years ago for my sister and forty years ago for my mother was what I still believe – we will see each other again and as we have never seen each other before – in all the beauty, light and love we are created to be. If death can take us to this place it can be the friend an old and wise friend of mine once suggested it could be.

  2. It is interesting that many people view faith somehow opposite to science. I have grown up in the Soviet Union with a society that has lost faith in anything, including the ideals that have created it. It is through the study of Medicine and Oncology that I have gained Faith, no religion, but a wonderment about life and appreciation of limit of our current knowledge. With the combination of both, the World opens more every day in front of me. The science guides me, but the faith is what drives me forward.

  3. Dr. Mo, you should have been a pastor! I’m a friend of XXXXXXX so I am aware of your caring and your competence.

    The comment suggested, “I’ll meet you on the other side,” is an interesting one. I know, as we seem to become more and more secular in our culture, faith becomes, for many, less and less important than enjoying the present physical attractions life offers.

    But think on this: “I’ll meet you on the other side.” There are many who feel faith is an irrational human construct. “There is no afterlife, no heaven, no hell, no soul that continues on.” But physicists tell us there are most likely more than the three dimensions we can sensually experience, four if we include time. How many? Five, fifty, a myriad of parallel universes, complexities beyond the capacity of our minds to begin to comprehend? Perhaps it is our ancient ancestors who understood it best and it becomes more and more likely there are qualities of existence we, as Paul states, “can see only dimly, but some day face to face.”

    I find the Shroud of Turing an interesting item. Beyond all the speculation and doubt I keep asking, how did the negative image of Christ become imprinted upon it in a time before photography and the concept of negative images as we know them did not exist? Back to that dim glass.

    The life we live today is all we are able to know and therefore, for the most part, we treasure it. What lies beyond, and even our scientists now predict there is much more, we cannot tell. Would we not be far more foolish to not to believe in a future we cannot comprehend than to deny such a future exists? I don’t think so, and evidently neither do you.

    A caring and compassionate attitude is, to me, the physicians greatest strength. There is a difference between being “healed” and being “cured,” and perhaps being able to “heal,” as XXXXXX shares you are so gifted at, is as equally important as being able to cure.

    My late mother was blessed with such a skilled oncologist who was also a man of great faith and the 94 years she was able enjoy was a gift to all of us. Blessings to you and your staff!

    Jon

  4. Laura K. says:

    Dr. Mo….
    I don’t think I can go to the “goodbyes” on this sunny morning. Everybody says goodbye eventually….

    Today, I remind you that what you do, and strive to do, and do in spite of innumerable challenges, is to offer the opportunity for many more “hello”s. I have skyped with my college student. I have purchased a birthday present. I have hugged my friends. I have had another birthday. I have learned to use my new gas grill. I have planted a garden (with the help of many) and eaten the produce.

    Your careful vigilance has added to my strength to live fully each day.
    I have and have had the opportunity to give and receive love each day. I am thankful.

    With gratitude….
    Laura K.

  5. Dale March says:

    Mo:

    When we first met, and you explained how all of the tools in your toolbox would probably have to be used along life’s remaining path for Carolyn, I was pretty sure that this awful disease would run it course and be the only competitor standing at the finish line. Snippets of unexpected (and unmeasurable) hope surprised us along the way: when new treatments and trials opened up; when our knowledge of the disease helped us choose a more vegetarian lifestyle with its own benefits, when certain courses of treatments actually had a recorded success rate in unity percentages (and, of course, we knew were going to be the lucky ones in that small percentile!). And you continued to do your best to navigate the convoluted path prescribed by the parties running the trials, their constraints, and insurance expectations – all very real challenges for very good reasons. But you never retreated from your original statement: whatever technology brought your way, it would very likely be something that Carolyn would need to curtail the spread of this disease.

    I am certainly no expert, and armed with only a sample size of one precious life and its ups and downs and ups and downs… my memory of the disease will be… that it spreads. We can slow it down here, and there, for a reasonable amount of time, but somehow it continues to find a way to thrive. Some day, God willing, that will be an absolute falsehood.

    So my advice to you is to continue to tell your patients the truth – that you will do your absolute best to apply all of the tools that your toolbox has, and you will continue to drive the industry to create even newer tools and improved research so that some day we will be able to halt the spread of this awful disease. Because it is… so… awful. But that is the truth. If we run from that, we are never ready to say goodbye.

    Recognize that every encounter with a patient allows you to say goodbye. In my humble opinion, by keeping the truth of the disease in focus, you are indeed helping the patient slowly prepare for death… even while (at least in Carolyn’s case!) they absolutely enjoy every additional minute that your care and (intravenous) “feeding” has brought them! I think the two things can be done together – recognizing that every encounter might be your last encounter – so that the next encounter is that much more rewarding.

    I think if you can “say goodbye” enough, then that last and final goodbye won’t be near as difficult as you fear.

    May God continue to bless all of your patients, now,and in the future. You are indeed a lucky man to be able to spend such quality time with these children of God on their journey back to their heavenly home!

  6. Claire Barnhouse says:

    Mo,
    I can understand what your trying to say here. I of course am not a doctor but a hairdresser of many years and I see clients on a weekly, monthly basis to. I get to know them and i become there friends. I lose clients to death to. One day you see them and then there gone the next..
    I can see why your colleges tell you to draw the line and not get attached…
    HOW?
    That is the key word here.. You cannot. You are a human being and that is impossible. I am so glad that you do cross the line a little..patients need compassion and hope and you give it..no matter what the outcome is you have to know that your patients really love that you really care about them and it defiantly shows.
    It was really hard for me to read your blog today. I wish my mom could of had a doctor like you fighting for her. But I fight to live Mo and with you by my side and whatever the outcome that god has for me I know you are doing your best. I am honored to have you as my amazing doctor of science..
    Your #1 fan
    Claire

  7. Annika says:

    Mo,
    Beautiful words and a great question.

    It made me think of Kahlil Gibran’s The Prophet, and in his words…

    “For what is it to die but to stand naked in the wind and to melt into the sun?
    And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?

    Only when you drink from the river of silence shall you indeed sing.
    And when you have reached the mountain top, then you shall begin to climb.

    And when the earth shall claim your limbs, then shall you truly dance.”

    It is only human of you to feel and empathize with your patients. You are a piece of their story. And they a piece of yours. Honoring these relationships and questions in your writing is acknowledging the importance of each one. As you are a teacher of health–of mind, body and spirit–you are also a student, learning from your patients.

    It’s a beautiful thing to witness and we’re so lucky to read your words.

  8. mail.mediacombb.net says:

    With pride , Mo. With pride that you got us this far! Because you have helped us all be winners no matter how long our journey has been. Thank you

    Sent from my iPad

  9. Nikhail G Perlov says:

    How you say goodbye? I would tell them “see you on the other side”. You were the one who tought me that death may not be the end but just a beginning of a path we are just too near-sighted to perceive.

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