Celebration

Sue wondered if all doctors subscribe to the same magazines, buy the same cheap furniture, post the same worthless insurance information.   She wanted to throw it all through the receptionist window.  The second opinion was a waste of time and she had little of that.  She was there to make her family happy, but was upset they could not cope, that they were not ready to face the truth, and so she would go through humiliation and fear… again.  Bad enough to die; worse to make big thing of it.

Her oncologist had been honest and direct.  Sue’s cancer had spread to lymph nodes and in lethal pebbles throughout the opposite lung.  Stage IV. No surgery possible. Too much to radiate.  Chemo might bruise the cancer, but offered no cure. “How long do I have to live?” Sue had asked. “Three to six months. Three without chemo and maybe six with. You need to get your affairs in order.”  Tough, realistic and focused, Sue had everything in order in three days.  Will renewed, Advance Directive complete, even funeral home arrangements ready.  Now just one thing to do…die.  Sue had lived a wonderful life and it was over.

Her son arranged a second opinion consultation with a pulmonary neoplasm expert at a “world class” tertiary care cancer center, that “wrote the book” on how to treat lung cancer.  Very exciting, heady stuff.  Sue refused to go.  She drew the line at traveling to hear the same dire pronouncement.  A meeting with a local oncologist, just a mile from her house, was scheduled. A compromise that left her feeling compromised.

Husband, daughter, son and Sue crowded into the exam room, each with their own list and agenda.  When the doctor entered, he seemed to focus entirely on Sue.  Oh, he shook everyone’s hand, spoke to each, and answered all questions.  However, his gaze was on Sue. He seemed to be measuring her, studying her, trying to figure her out. Maybe even a little spooky. Moreover, he asked odd questions.  Was she spiritual?  What were her hobbies?  How many grandchildren?  About what was Sue passionate?

Still, she had that cough.  The x-ray showed pebbles.  The pathology report said cancer.  Surgery was impossible.  Radiation a bad idea.  Chemo almost as worthless as sand castles in a hurricane.  Stage IV cancer.  Just one thing left to do.

“Doctor, we need to know the prognosis.  How long am I going to live?”

“Do you really want the answer?”

“Yes. “

“Well, Sue, you have a cancer that can not be cured. You have a cancer from which you will probably die. I have no idea how long you have to live.”

“I was told less than six months.”

“That might be right. Might be wrong.   Statements about time and life are much more up to God than me.  Really, look at the research; the only time doctors are good at predicting survival is during CPR.  However, I can tell you this.  Right now, today, tomorrow, you are alive. How you live that life and how long, is up to you.”

“I don’t understand.”

“Well, you can say, “Hey, I have cancer; I know what that means,” and go home, turn out the lights, and wait in a corner to die.  If that feels right, that is OK.  Or else you can decide not the play the “cancer patient” role at all.”

“How would I do that?”

“You would grab each moment, love every sunrise and jump into each day. Revel in the life you have.  Exercise.  Eat.  Fight.  Get out and celebrate.”

“But, the cancer will still be the same.”

“Perhaps.  But, you can live the time that remains, and not die while still standing.”

The second opinion for the cancer was unchanged.  However, to Sue, the prognosis was different.  She went home and cried for a long time.  She decided that her affairs, after all, were not in order.  There were people to see, places to go, things to learn, letters to write, cookies to bake, prayers to say and wind to feel on her brow.

Sue died not long ago.  The lung cancer did not stop.  Nevertheless, in those four years since the diagnosis, Sue rejoiced.  She celebrated daily smiles, family travails, dry Thanksgiving turkeys, the moon on Caribbean waters, 43 books, long walks with blisters, bad April fool jokes and two grandchild births.

The medicine that kept Sue alive was not in a bottle. It was an elixir from her soul. She learned that those last years were not a part of death.  Sue healed and gained strength because she decided to live.  Whatever tomorrow might bring, sunrise or sunset, this moment, right now, is infused with the glory of life.

 

22 Comments

  • Biren
    Jim, as an oncologist, i feel that these are the "wins." I must say though there are some who have hard time with living with fear.... It is hard to see the suffering due to it.
    • James Salwitz, MD
      I agree... at some level, anyone can choose and mix chemo, but when a doc can help a patient to find an easier path, it is really a "win." Sadly, I believe you are right; there are a few patients who because of what life has previously dealt them, have a very difficult time handling fear. jcs
      • Liz
        And because of how a doctor deals with their patients this affects how a patient deals with fear. I have had a string of cancers in the last 10 years - breast on each side, very early colon twice, very early melanoma, and 2.5 years ago one of the indolent non-hodgkin's lymphomas which was caught early with abdominal nodes in several places. The doctor I have (and still have because it is extremely awkward to change doctors there and you risk being fired from the facility), at a well known NIH cancer center, doesn't do patient emotion well, was unwilling to help me struggle through that period where you are still hoping with this one, because it was stage 1, you'd be one of the lucky ones who can be cured; who had the attitude that since you were going to die from this you needed to get over it and move on. Well yes you do need to "get over it" and "move on" but that is easier said than done and is a process that takes time with many emotions along the way. It is harder to learn to accept the "no cure" aspect of the diagnosis and deal with that fear when the *process* of getting to that point is not acknowledged by the doctor; when there isn't some help from the doctor to get to that point. Incidentally the counselors I have gone to over this have their own big fat issues with death and were next to useless. It is my impression that burned out oncologists protect themselves by not wanting to deal with the emotional side of an illness like terminal cancer, make it the patient's problem and blame the victim. Yes you are right that there are people who have trouble dealing with fear - heck I think every single one of us is like that in some circumstances... however it is my opinion that it is NORMAL to struggle to accept that you are going to die, that there isn't some magic bullet that will solve the problem this time; that this time you are out of luck and a different approach to treatment might be in order. A patient needs help with that, or at least compassion. Does the person helping have to be the oncologist? No, but it sure helps if they have some compassion and then refers them to someone who can help. I know it took me the better part of 18 months to adjust to the fact that searching for information, the latest clinical trials, etc. were not going to result in finding a cure. I had to go through that process as I deal with stress with information. There was no short cut that I knew of. My mother deals with stress by denial... each to their own and that is an important point - people will react differently. In my opinion it is the responsibility of the doctor to help the patient find the help they need (or at least suggest it) as the emotional side of this is as bad as the medical.
        • James Salwitz, MD
          Remarkable comment. It is my belief that doctors need to be part of the ongoing conversation regarding disease, prognosis, end-of-life planning, fear and death itself. Most physicians were never trained in this sort of communication and never given "permission" to be emotionally involved with their patients. Rather than being "burned out," they have never even entered the emotional arena. It is my hope that through continued teaching and through the words of patients, such as you, that more physicians will discover that they cannot take care of people with terrible disease, while at the same time ignoring the terrible potential of that disease. Thank you very much for your words. Any time you wish to expand further on your experience and wisdom, I am sure many would be interested in learning from you and I would be happy to post as a comment or guest blog. Respectfully, jcs
          • Liz
            I am sure you are right - training emphasis keep your distance emotionally. I am also sure that sometimes it can be burn out due to caring too much. I used to work with adjudicated youth. I had to learn how to show I cared without becoming emotionally involved with the kids I worked with; without letting them push my buttons. I had to learn how to emotionally distance myself from these kids without turning off emotion towards them. Once I figured that out, and don't ask me how I did as I have no clue (haven't really sat down to figure out how I changed my thinking to be able to do that), I could handle anything these kids dished out without personally getting upset and I could give them what they needed from me without risking emotional exhaustion, anger, frustration... I think that would be a good skill for oncologists/any doctor. How do I get hold of you privately to discuss the offer of writing something more (I posted the same question - contact info - on the other comment I made that you replied to today)?
          • James Salwitz, MD
            Feel free to email me, anytime; JIMSAL@MSN.COM jcs
  • Nice piece and message.
    • James Salwitz, MD
      Much appreciated. jcs
  • D. Lane
    "She wanted to throw it all threw the receptionist window" should be "She wanted to throw it all through the receptionist window." Wonderful post.
    • James Salwitz, MD
      Ahhhh!!! Thanks very much. jcs
  • Reminds me of the recent Valerie Harper news about her terminal cancer and her very positive attitude. I think I will call the positive response toward cancer as the Rhoda mantra - a very good mantra for all of us.
    • James Salwitz, MD
      Perhaps not as much a positive response toward cancer, but a positive response toward life in order to battle cancer. The Rhonda Mantra - "a reaffirmation of the glory of life in the presence of critical illness." jcs
  • Eileen Burns McNally, RN
    Years ago my mother was diagnosed with IHSS by her cardiologist. I asked him if there were anything to do about it. He said no. I asked him what was likely to happen and he said it would probably shorten her life. I decided not to tell her that. I just said she had IHSS and she accepted that. In retrospect I probably did not have the right to keep that information from her but I did it out of love and it turned out to be the right thing. She died last year at 97. One of my ER doctors talked about being a "cardiac cripple" and living each day with the fear of dying. I did not want that for her.. I miss her every single day...
    • James Salwitz, MD
      It is too bad that you needed to protect her from the doctors, instead of getting the support and motivation she deserved. Given the choice of not being completely open with her and the possibility of breaking her down, it seems a reasonable and compassionate decision. A critical message for physicians in your story is the need to build trust not only with the patient but with the family. If a doctor can communicate with the family in a supportive manner, than they are more likely to allow the doctor to be "honest" with the patient. I am glad you have wonderful memories, but am very sorry for your loss. jcs
  • Debbie Hadam
    This is the attitude that My Dad had when he found out he had ALS. He was a fighter and wanted to live every minute that he could. Thanks for a great post and much needed reminder to live life while we can.
    • James Salwitz, MD
      Your Dad, who I had the honor of knowing, was a remarkable man, who even when his illness was very advanced always had a twinkle in his eye, a love of life and an interest in others. I guess the acorn does not fall far from the tree. jcs
  • Eileen Burns McNally, RN
    Thank you...a bigger loss than I ever imagined. One of my patients said to me "she will leave a big hole when she dies" and he was so right...I had her for so long and it was time but to hold on to her would have been for me not for her...
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  • My favourite part of this exceptional post: the way you itemized Sue's list: "...daily smiles, family travails, dry Thanksgiving turkeys, the moon on Caribbean waters, 43 books, long walks with blisters, bad April fool jokes and two grandchild births". Brilliant. As someone who lives with ongoing and increasingly debilitating cardiac issues, I decided a while ago that in reality, I have a very limited number of hours left on this earth - as each one of us does! Unlike most others, I probably have a heads up about what my cause of death will be, but hey! - I could be wrong. I could get hit by a bus tomorrow, long before my brave little heart stops working so hard to keep us both going. But every single person out there is in exactly the same boat as I am, with exactly the same unknowable prognosis and utter lack of longevity guarantee. So we might as well make the most of all the turkey and bad jokes and daily smiles we have coming to us. Thanks so much for this wisdom, Dr. S. regards, C.
    • James Salwitz, MD
      Thank you very much for your kind words. Please do not get hit by a bus tommorrow. First of all, it is the start of July and all the new interns are working in the emergency rooms and second, it seems you still have important work to do. jcs

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