May 29, 2014

Don't you want to find a cure? (Memoirs of a Cancer Nurse)

During my employment on P-12 at MD Anderson, I saw a lot of patients battling very rare cancers.
One such cancer was Cardiac Sarcoma--cancer of the heart.  This cancer is a very fast-growing and aggressive cancer, often attacking otherwise healthy young people.  During my year at MD Anderson, I treated 3 men with this cancer.  Just months before diagnosis, they had all been healthy young fathers and husbands without a care in the world.  By the time I was their nurse, they were quite ill and just trying to stay stabilized and well enough in order to receive chemotherapy.  This could be quite tricky because as you might guess, when there is a tumor in your heart, it really puts a damper on your health and ability to handle even the slightest amount of stress, so getting these patients on a treatment schedule was not easy.

The last heart sarcoma patient I cared for had flown to MD Anderson with his wife from across the country in order to seek treatment.  He was young, otherwise healthy and fit, and had two daughters (ages 2 and 4) at home waiting for him.  
He had already gone through a few chemotherapy treatments and was now just waiting for his blood counts to come back up before being able to start another round of chemo. 
When I walked into his room for the first time, he was slowly walking back to his bed from the bathroom, clutching his IV pole, and looking a little short of breath.  I quickly glanced at the heart monitor reading: 220 beats per minute (average should be between 60-100). 
I got a little freaked out and looked to the night nurse who was giving me report before heading home.  "He's been doing this all night," she said.  "The doctors are well aware, the lowest his heart rate has been is 130 bpm while he sleeps."  
Holy moly!  
Stabilizing and caring for this patient very quickly became my #1 priority.  I paged the sarcoma docs and asked them to see him as soon as they could that morning.  Within a hour this poor guy was placed on strict bed rest to keep his heart rate from rising so high and placing so much stress on his diseased heart.  He was also placed on several new medications to hopefully stabilize his vitals.  I spent a lot of time in his room that day caring for him and had the chance to get to know he and his wife.  
At one point in his career he had been an FBI agent working in the field and had always been in great shape.  "And now," he chuckled through labored breathing, "here I am: can't even walk to the bathroom without feeling like I've run a marathon!  Oh, and I can't tell you how excited I am about this urinal business!" he smirked holding up his bedside urinal he would have to use now that he was no longer allowed out of bed.  Poor guy.  I really felt for him, but despite his situation, he retained a light-hearted sense of humor and remained pretty pleasant and optimistic. 
"Honey, we'll just focus on getting you some rest and getting you healthy so we can continue the treatment and hopefully go home in a few weeks," his wife said.  They were such a nice and good-looking couple together and they showed me pictures of their beautiful little girls.  I could only imagine how hard it was for them to be away from their children and I felt all the more determined to help my patient get the treatment he needed in order to return to them in health. 

A week later I had this gentleman as my patient once more.  
He didn't look any better that day and he seemed to be pretty discouraged.  His resting heart rate was 140bpm. 
"They took the post-chemo CT scan of my chest yesterday," he said. "My wife should be here any minute and the doctors said they'd be coming by with the results soon."  He looked a little nervous laying there in bed that morning waiting for the doctors to come. 
"My wife, she wants me to keep fighting," he continued. "And I want to keep fighting if I have a chance......but if I'm dying.....if this chemotherapy isn't working......I want to know.  I know my heart is beating twice as fast as it should.  I feel like crap.......I don't want to die in this hospital.....if I'm going to die, I want to fly home while I still can and spend my last days with my little girls."  He looked at me pleadingly and grabbed my hand. "Please, I just want to know the truth....even if it's bad.  I just want to be able to go home while I still can, you know?"
"Of course," I said.  "I'll go print out your lab results from this morning for the doctors and be back."
My heart fell for this patient.  He seemed to be giving up hope, but he had so much to live for!  He was so young with a great career and beautiful family.  A part of me wanted to encourage him to just keep fighting, yet....if seeing his little girls again was the most important thing to him, then maybe continuing to fight was not what my patient needed to do......

While I checked all of my patient's morning blood work on the computer at the nurse's station, I clicked on the results of the CT scan.  The report stated that while there appeared to be a small amount of necrotic (dead) tissue in the center of his tumor, the tumor itself had doubled in size in the past month.  My heart sank.
I am no radiologist, but it was very apparent from the scan that this tumor was destroying his heart.  In a way I was very impressed that my patient was still alive with something taking up so much space and closing off so much of his ventricles and main vessels.  
Within an hour I was back in the patient's room while the team of sarcoma doctors and residents came filing in to give him the CT scan results. 
"Well, good news!  It looks like the chemotherapy is working, and the tumor is responding and dying.  I think we'll be able to start another round of chemo. within a few days," the doctor smiled.  Wait, what?  Did he just say what I thought he said?!   
My patient's wife let out an audible sigh and smiled through her tears.  My patient looked a little skeptical and glanced quickly at me for some reassurance.  I tried to keep the confusion I felt from reaching my face.  
"You know, I really don't feel well and my heart rate is so high just laying here." my patient said.  "I know I'm not a doctor, but isn't that kind of a bad thing?  I just.....I don't want to go through another treatment and then get too sick to go home."
"Well, you do have a big tumor in your heart so it's no surprise that your heart rate is high, but the tumor is dying and I think you'll tolerate another round of chemotherapy well.  I do recommend that we continue to move in this positive direction while the tumor is weakened," the doctor replied.
"Definitely, let's keep moving in this direction," my patient's wife said, squeezing her husband's hand.  Satisfied, my patient nodded his head and smiled.  The room was filled with smiles, hope, relief, and optimism.....yet I remained silent and unmoving in the corner of the room.  I felt like I had been electrocuted by the conversation that had just taken place.  What about the part of the CT scan that showed that my patient's tumor had nearly doubled in size?!  What about the fact that my patient's condition was not improving and that his greatest desire was to see his little girls again?
Perplexed, I followed the doctors out of the patient's room and pulled one of the residents aside.
 " know, I'm a little confused," I began hesitantly (assertiveness is NOT my forte).  "I know I'm no radiologist and I know that the patient's CT scan mentioned some necrosis of the tumor's center......but the CT scan also showed a lot of tumor growth, something that was never mentioned to the patient......"
She just looked at me blankly.  "So?"
"So," I continued, "I think he should know that his tumor is still rapidly growing.  He told me this morning that he does not want to die in this hospital.  He has two little girls back home who he wants to see before he dies and he wants to know if it's getting bad so that he can go home and be with them.  Don't you think he should know about the tumor growth so he can make that decision?!"
"Okay, wait.  His tumor is growing, but there is necrosis there, meaning that it is starting to die.  This treatment is working."
"But what of the cancer doesn't die before it kills him?!"
The resident let out a sigh of frustration. "Look, this treatment may actually save his life and is the first positive response to treatment we have seen in this cancer.  If we just give up now, then he WILL die!  Don't you want to find a cure for your patients?  Don't you want them to get better so they don't just have to go home and die?!"  Visibly upset with me, the resident turned around and walked away.
I was stunned and frozen to my spot for a few moments.  Was she right?  Maybe she was right......
I DID want to cure cancer.  Are you kidding me?!  I don't think there is anything I want more than to eradicate cancer so that young moms and dads, wives, husbands, children no longer have to suffer in agony and then leave their families behind broken-hearted and ragged from the whole ordeal.........I HATE cancer. 
And this is MD Anderson.  
If a cure for this heart sarcoma is going to be found, it would be here, right?!  These doctors were working feverishly and heroically, trying to save their patients' lives and cure their cancer.  What more of a noble career to have and cause worth fighting for?! 
Yes, I want to find a cure!!!
.......but I couldn't shake the words my patient told me that morning when he grabbed my hand, almost in desperation. "I don't want to die in this hospital. If I'm going to die, I want to fly home while I still can and spend my last days with my little girls."  
I'm sure that no one wanted to find a cure for his cancer more than my patient did.  However, I don't think that he wanted to be the guinea pig towards finding that cure if it meant not being able to see his girls again.  His girls were more important to him than a possible cure.........There was something more important than a cure.......

As much as I wanted my patient to be cured, I could not be okay with him thinking that his tumor was dying without knowing that it was still rapidly growing, even if that knowledge meant an end to his pursuit of treatment.  However, as the nurse I had absolutely no legal authority to tell my patient the results of his scan.  I was not the doctor and could not give him this news. 
I talked to my manager about my ethical dilemma and was soon in a meeting with the hospital ethics committee.  I absolutely hate confrontation and I was physically shaking just thinking about how irate those sarcoma doctors would be if they found out it was me who opened up a big ethical investigation because of this.......but I am a nurse, I am the patient's advocate, and I couldn't be silent knowing that he was not being given all the information in order to make his own decisions on his treatment plan. 

The next afternoon, while away from the floor for a what should have been an uneventful echocardiogram, my patient's heart suddenly stopped.
He received immediate CPR and hospital staff were able to restart his heart and transfer him to ICU, but he had to intubated (put on a ventilator) and sedated (put into an induced coma).  He obviously would not be starting another round of chemotherapy anytime soon......
A few weeks later I found myself on the ICU floor.  I was filling out paperwork after spending over an hour helping perform CPR on a patient who had suddenly collapsed on our floor.  It had been a nightmarish hour where we kept thinking we would be able to save the patient, but upon transferring her to ICU and after a few more rounds of CPR, it was apparent that she was gone.  I felt ragged from that hour, and as I sat at the nurse's desk finishing up my paperwork for the code, I looked up and glanced into one of the ICU rooms.  There was my heart sarcoma patient, hooked up to a ventilator, still in a coma, his wife at his bedside holding his hand.  
I walked into the room to say hello.  His wife smiled at me and gave me a hug.  "How is he?" I asked.
"Doing better, so much better!" she smiled.  "The doctors are going to try to wean him off of sedation tomorrow so we can hopefully get him off the ventilator and back up to P-12 to start that chemo."  She sounded so upbeat and hopeful, but as I walked off the ICU floor seconds later, I burst into tears.  He did not look well, I knew in my gut that he would probably not make it out of the ICU alive, and I wondered if any of the doctors had even thought about preparing his wife for this most likely outcome.....

A few weeks later, my patient passed away in the ICU floor, never having woken up since that day that his heart had stopped during his echocardiogram. 
I harbored so much sadness and anger over that last day that I took care of him.....part of me still kind of does. 
Obviously my patient's outcome would not have been any different had the doctors let him know that his tumor was indeed growing.  He was not stable enough that very day to fly home and his heart stopped the next day.  No matter what the doctors would have said, there would have been no way for him to see his little girls again before he passed away. 
However, I still feel haunted by the fact that my patient was not given the whole truth about his condition because there was a small chance that the chemo might work.

"Don't you want to find a cure?" That resident's frustrated words still play over and over again in my mind.  
But so do my patient's words: "I don't want to die in this hospital. If I'm going to die, I want to fly home while I still can and spend my last days with my little girls."

As a nurse, it is my job to help restore health
to help save lives
to be a part of the process of finding cures.


sometimes there are things that are more important than a cure,
more important than saving a life.
My job is so much more than that--
advocating for my patient,
educating my patient,
helping my patient be informed and feel in control over his/her care,
showing compassion,
crying with a patient,
holding a patient's hand.

Though as a nurse I always hope to see my patients return to full health, since that single, tragic experience with that particular patient I do my best to never let that goal get in the way of loving and serving the person I am caring for.

Also because of that particular experience, I have learned that there are more important and pressing things in life than life itself--
quality time,

Life is going to be full of challenges, trials, problems, and heartache and I'm sure we'll all be looking for "the cure" to all of the difficult things we'll be given.  I only hope that as I go through my own, I remember that perhaps there is something more important than just "getting through" the trial, or having my heart no longer hurt, or being "cured" from whatever ails me; perhaps the whole point of going through it is not just to come out whole and scar-free but to have  learned from it, to have remembered what was most important through it all, and to have grown into a better person despite of it all.

Do I want to find a cure?
But I never want to lose those things that are more important in the process.

1 comment:

Shauna Fenton said...

Holly! I tried to post earlier, not sure if it worked...Thanks for writing! You have a beautiful style and perspective! Keep it up! You have a beautiful family,
We miss you! Your P12 family

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