Category: Patient Care

Random

Posted on by momilhem

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

 

Frazzled

Posted on by momilhem

The tension in the work room was mounting. The research coordinator sat next to physician’s assistant who was waiting eagerly by the phone. She was waiting for a phone call from the radiologist. I knew who this was for as I had walked by the room multiple times and seen the patient pacing up and down in the room very anxious to know the results of her MRI scan. It’s not an easy sight. The pacing and that anxious look. The door was open as I passed by, her face staring at me longing for assurance. I gave none, because I did not know the result yet. I offered a simple smile, but this does not have the wanted effect. She continued pacing.

I feel a need well up inside me to remove this patient’s anxiety. Patience, my mind says, we have been down this road before. I’m ready for both battles, but not eager to engage in the battle of bad news. I continued what I do best, seeing other patients. I do not like not knowing too, I thought. I was beginning to get anxious myself, it’s taking too long for the radiologist to get back to us with the results – a sign perhaps that this was not going to be good news after all. I regretfully conjured up the thought of giving bad news. I carried that with me in my heart from room to room as my team patiently waited by the phone. She was not alone in this. But I am sure she felt that she was. We were all worried. That is a feeling we rarely share back with our patients. It’s the feeling that we need to know, for better or for worse.

It’s hard not to get involved emotionally sometimes waiting in anxiety for a test result that might determine the next treatment or seal the fate of a person. The phone finally rang. It’s annoying sound shattered the pensive feeling that surrounded it. It was like waiting for your final grade after an exam you had studied so hard for. I stood and watched, allowing the reality of the truth to become manifest. Her voice was solemn “yes” she said listening intently and jotting down what was being said. I could not hear the radiologist on the other line but I could hear the tone of the voice of the person receiving the news, it was reassuring. Her voice heightened with every response listening intently as the radiologist told her his thoughts about the scan. Each response she gave was happier than the previous. The coordinator and I were smiling. This sounded like good news, the tension in the air very quickly melting away.

We all walked into the room. Frazzled, my patient’s tears were quick to show, and we all shared the news that things looked better than they had seemed. In the rush of it, I hugged her and she started to cry. It was a powerful moment captured in the cathartic delivery of the truth after a very long wait. It was worth it in the end. The coordinator joked “now you have to fill out the questionnaire”, revitalized, the patient just said, “happy to”.

I have been through these times with many people, with them on this anxious journey. I tell you I do not like it one bit, the wait, the pacing, the lack of knowledge and the race of emotions as the truth unfolds. Experience has taught me to be patient as sometimes the unexpected does happen and the wait was merely a mask behind the victory that needed to be told.

Mo

Yell

Posted on by momilhem

Her face was ashen as she walked into the clinic room. Her movements were slow, and deliberate. She was clearly significantly fatigued. Not the bubbly person I knew her to be 2 weeks ago. Clearly something was amiss. I was walking to see another patient, but my critical eye could not dismiss that my patient was in dire distress. When it was her turn to be seen, I entered her realm. She was lying on the examination table with a blanket up to her chin, the blood pressure cuff was beeping a bunch of numbers at me, and the room’s neon lights were turned off to make her more comfortable. I stood at the foot of the bed and looked deep into my patient’s eyes. Examining her as I would, fully present, I noticed as my coordinator scurried to remove the cuff from her arm and get her papers together. My patient was in trouble.

I looked deep into her eyes. She was participating in a clinical trial offering a new agent for the treatment of her disease. It was clear to me that the treatment had taken its toll. I was saddened and angered by her ill physical condition, but how can you show your anger to a person you highly respect. Someone who had taken a chance to help herself and so many others by participating in a trial that might define the next treatment for the generations to come who are plagued with this disease. I asked her husband “How long has this been going on?” He replied “for the last 10 days. She has been sleeping for almost 18 hours a day.” She was fatigued to the point it was interfering with her life. “I did not want to bother you”, came slowly from her lips “I just pushed on wanting to make the treatment successful”. Ah, that common feeling of wanting to do more than what is expected. Here is what I have to say to that, to the patients who feel they do not need to reach out when they are in trouble. Don’t be silent, YELL. Let me know, make as much noise as you need to, your voice is always heard, you are alerting me to things I want to know and things I can help you with, averting a potential danger. Don’t wait, don’t ever think you are a bother, and don’t ever imagine you interrupt or annoy me; I want you to be an honest messenger to an event that I can help you get though. You are a beacon to help me, and I am the lighthouse that shines the light to help you through these troubled waters. YELL.

We talked through humor and we made a laugh of it, I guess that is the way to express your anger to those you respect. “I am such a Dodo” she said, “I just did not know that I could bother you even with this”. Her husband’s eyes filled with tears as he realized he could have intervened earlier. “It’s ok” I said, ” I’m an oncologist more is always better, let’s hope it kicked your tumor’s $@# for the trouble it has put you through”. That brought a few cackles. I saw what I needed, the relief that she had shared her trouble and that once again it was not her responsibility for the decision. It was mine. I reassured her, asked my coordinator to check on her every other day; till I knew she was out of the woods. I said “it’s not your decision any more to just not tell me, I am going to have someone call you to make sure you get out of this, safely”.

My friends, yell, when you think it does not count, yell and you will be heard. It’s my job to make sure you live your life, and not suffer unnecessarily. Yell. I want to know how I can help you. I will always be there, and with the knowledge I have I will guide you to safety.

Mo

Invitation

Posted on by momilhem

“Just tell him he has more than 4 weeks to live”, her eyes welled up with tears. I reached for the tissues that are so conveniently placed in every room in the cancer center. He had sarcoma in his lungs, and the surgeon could not remove them after taking him to the operating room. He had recovered remarkably from the surgery and had come in to the office to talk, perhaps seeking re-assurance. He said “I keep thinking about my grandson, and I want what’s between my ears to stop thinking so hard about it”. I handed him the tissue now because he had started to cry. A common occurrence in my clinic, that emotions are powerfully shared. We all know we are eventually going to die; the acuity of the realization always hurts. I reassured him and his wife. He likely would not die in 4 weeks, and I had treatments up my sleeve. He was receiving an invitation from death, that he was next. How do you as a human being understand that you have to die at some point and reach acceptance? If death had a language how would it knock at our doors?

He left feeling better that he had come, I was glad to relay to him that death, albeit near, was not as imminent as he thought it was.

Events in my clinic remind me of a lot of death. It hovers around me like a teacher, not an enemy, and it speaks a language we are young to understand as humans. I want to share it more openly because many are frightened to talk about it. I might be very comfortable with the notion of dying, but in me there is a unique struggle that I share with everyone who gets a call from cancer to die. For starters they meet me and they begin a journey each one different. It’s like looking into a kaleidoscope the richness of colors, shapes, beauty and vitality that the human spirit brings with it. There is also the fear, the aloneness and the uncertainty of the how? When? And why? Questions I have yet to answer accurately. I had a conversation with a colleague as I waited for the bus to go home. She talked to me about a patient that just wanted me to call him. He had transitioned to hospice. She told me he was so appreciative with the decisions we made that had given him 4 years of survival. Of course I will call him I told her. Many thoughts as I bobbed up and down on the bus, it has a way of percolating thoughts, having someone else steer you to where you need to go so you get to focus on other things. I have often told my patients, sit back, I am the bus driver. It might be rocky but I will drive with what I know.

How do we end this conversation? Well consider it a beginning of a deep understanding of a process of life we choose not to acknowledge until we receive the invitation to understand it. We focus on health, love, family and life. We do not talk about an inevitable process called death. It might be very lonely sending us invites welcoming us to the next process. It is sobering to discover that which many fear in their hearts teaches a deeper wisdom that is appreciated. I too travel to my own, and I wait for an invitation to join those who have already passed.

 

Trash

Posted on by momilhem

Once a week we are all cognizant of taking out our garbage and filling our recycling bins. It’s an active act on our part that requires the patience to collect, sort and remove waste from our homes. But it is not all us. There is a dedicated service that comes and removes it from in front of our homes every day whether it is raining, snowing or just plain humid. It appears to be important for each one of us weekly. Some of us look forward to it; some of us actually dread it. What is clear is that the service runs daily with a dedicated staff that makes sure that this is done consistently throughout the year. It is amazing, noble, and often forgotten.

I was born in a small town called Ahmadi in Kuwait, where I lived until the Iraqi invasion in 1990. While this moment in my life is filled with many stories, I will choose one that I truly feel has touched me more than anything else I know about how communities thrive. During the occupation of Kuwait in the beginning several months, all public services ceased to exist. The one service that was sorely missed was the garbage truck that took the trash from in front of the people’s homes. As days went by, I watched as piles of waste increased on the streets, in alley ways and in front of large mansions. It was filthy, smelly and nauseating to walk amongst these streets. Flies and rats became plentiful feeding off what people threw out. It was a frightening vision of the importance of not forgetting how vital this service was to the community it served.

Once a year, we are pleasantly reminded that it is “Melanoma Awareness Month” and through the commotion of our lives we attempt to do our best to make visible that which needs to remain constant throughout the year. Three of my friends shared with you stories that spoke of their struggles with this deadly disease. There are many more that go untold that are held in the hearts of the dedicated staff that work diligently all year long to provide the care that my patients need. Today I sat in clinic and watched each one of them do their work. Their work may feel inconsequential, my nurse answering a patient phone call, my medical assistant “rooming” the patients and my physician assistant telling me the latest troubles of the patient she had just seen. In my eyes, each played on their instrument strumming almost perfectly. I can only imagine the amount of chaos, just like in Kuwait, if I did not have my team. What an honor to be a part of them!

In this month with my heart, I take a moment, to honor the untold stories of our heroes, those who make their lives a part of others helping them through difficult times, the families that support my patients traveling through these troubled waters.

So the next time you take out your trash, reflect on that which really is taking care of you.

Mo

 

In case you missed my guest bloggers who wrote for Melanoma Awareness Month, here are the links to their stories:

On May 7th, Tom Armitage shared his battle with melanoma in his blog entitled “I’ve Got You Under My Skin”.

On May 14th, Molly Menard shared the story of her husband’s fight with melanoma in her blog entitled “Melanoma? That’s it?”

On May 21st, Brett Yates shared his father’s journey with melanoma in his blog entitled “Cheers and Have a Wonderful Life”.

Thanks to all of my guest bloggers who shared their stories this month!