Patient Care, Perspectives, Sarcoma

Random


Death is a door. It is a moment in time that is well-defined.  Once it happens it is irreversible. Just like the diagnosis of cancer. It cannot be undone. I have said the word “Sarcoma” to so many patients. Yet this is a rare disease. It stems from the Greek word that means “fleshy growth”. Yes it is old, and it was present in history before. It scares me to know so little about it. I am just perceiving its vastness. Sometimes when I share with my patient it feels like I am speaking a different language. Muffled I sound to the patient, loud to the student. When I teach it I find myself saying to my students “Sarcoma makes me look smart because there is little known about it, and not a lot of people grasp it. Although I do not feel I know much, it just seems enough.” It is hard to comprehend.

I just hung up the phone with one of my fellows, he was talking to me about a patient who was not doing well. I could sense the eagerness in his voice to find another treatment, but the realism that there is none comes from my experience. A resistant disease to treatments that depend on a very old medicine; surgery – Cut it out, until you cannot , then keep trying to slow it down, with an inevitability that you cannot escape. A truth I have been facing many days in only trying to communicate it better with those who suffer its consequences. We can never relive the past, we barely stay in the present and the future never comes.  But there is a point when all this stops. I oscillate between the concept of death and the diagnosis of sarcoma.

Sarcoma! What is it? I don’t know? We have defined it as more than 150 subtypes. It stems from a very primitive cell called mesoderm. The most common cell in the body but it only makes up 1% of all human cancers. Rare is the diagnosis. Having a sarcoma gives uniqueness to a moment that really makes the person in front of me rare. Having a diagnosis of sarcoma gives definition to a cancer journey, to a patient’s identity, and to my relationship with them. I touch upon the relationships in my mind briefly, like staring at scars that are hard to forget. The knowledge of sarcomas is derived over many years of experience; it is slow to digest, hard to understand. Just like the knowledge of death.

Why am I writing in this way to you this week? Just random thoughts as I sit here on the couch thinking. Perhaps like the random selection of a sarcoma that appears in a human being. Random but exceptionally rare. How can that be random? I share with you my inner pendulum as I swing back and forth between a disease that is so little known and an event so little studied.

It takes a lot of effort and collaboration to get together and understand this very difficult disease. I believe Sarcoma doctors are the only ones who collaborate for the right reasons. They genuinely need the guidance of each other and act as a team to help understand this very diverse, very unique disease. I think of my patient who is struggling maybe near his end, after resisting so many therapies, what else can I do? I think about how inevitably I will fail, trying to find the key to helping patients. We have had small victories in our understanding but it still remains a mystery. I am in constant battle against the unknown and I am about to be wounded again, scarred, as my patient represents my unforgettable memories of him. Wish I could just take a shower and let it all wash away.

Random are my thoughts today. Resistant is the disease I treat. In an endless battle I stand, ready to fight again.

Mo

 

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4 thoughts on “Random

  1. Mo, I was dx with stage 4, type 4, highly undiff endo sarcoma. That was 5 years ago. I have been free of evidence of disease for 3 years now. I feel deep gratitude. Know that some of us do make it. As whole human beings, I think this dis-ease needs to be addressed at every level–physical, spiritual, emotional, mental, social. The greatest predictor of cancer survival is the level of joy within. May your patients find joy somewhere.

  2. I can’t help but think of Revelation 21:3,4 “..he WILL wipe out every tear from there eyes, and death will be no more..” A promise. My sister has finished treatment and so far the scans are clear but we will still have that worry in the back of our minds. Mo you truly care for each and everyone one of your patients, I can’t imagine the struggle you have whentthings are beyond your control. We appreciate your fight!

  3. I have Ewing’s sarcoma; was diagnosed in Feb ’13. I’ve been through a grueling year of chemo, surgery, radiation, & more chemo. The sarcoma was to the left of my spine, resting on my ribs; surgeons thought it would require possible spine reconstruction but it responded well to the chemo and shrunk small enough that the surgery only took 3-4 hrs instead of the anticipated 10-12 hrs. God has been so good! Now, however, we continue to run CT scans, MRIs, all if which have come back clean… so far. The full body bone scan is being put off for awhile to wait for healing. My oncologist won’t say “cancer free” until after the bone scan has been done. What are the odds that something shows up in that bone scan??

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