Saturday, March 03, 2007

unknown endings

As an oncology nurse, one of the everday realities I face is death. I don't exactly have patients dying left and right, but we probably have (on average) about 2 patients per month that pass away. Thankfully the majority of these are usually 'comfort care' patients which means medical interventions are minimized and the patient's comfort is maximized--in other words, their last moments of life are not graced with a flurry of nurses and doctors and respiratory therapists pounding out chest compressions, shocks, or attempting intubation. I could write an entirely different post on that topic but for your sake and mine, we'll bypass that novella for now.

We also have a great population of chemotherapy patients who only come to the unit when they are doing fairly well and need to be hospitalized anywhere from 2 days to several weeks to receive a course of medication. Many chemo regimens last at least 6 months and during this time the patients will come back every 4 weeks. While many people can receive chemotherapy at a clinic and avoid hospitalization; many of our patients represent the more advanced diseases; and many of them will (at best) prolong their life; not necessarily eradicate their cancer. This is something they know from the very beginning; along with all the side effects chemotherapy entails. As you can imagine, one can get to know the patients pretty well over the course of their treatment. Some of my favorites (names are disguised for HIPPA reasons, the pics are random googled photos that may or may not quite accurately represent the real person):
Betty-An elderly lady with a sunny spirit who lived most of her life and raised 3 children in the Alaskan wilderness. She stayed with her daughter in Seattle for 6 months to receive her therapy.

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Randy-A middle-aged man who was a strong Protestant Christian who had an amazing sense of humor. He was determined to undergo even the nastiest of therapies (IL-2 for those interested) to treat renal cell cancer and prolong his life to witness the birth of his first grandchild.
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Larry-A rebel with a cause middle-aged retired Marine corps guy whose greatest love in life was his motorcycle (his girlfriend was probably second=)

Eveline-A poised, kind lady who was very private about her disease. She managed to keep a full-time job which was very important to her. She was quite proper but if you got to know hew well enough you'd find out she cherished a secret of little trips to Las Vegas.

Occasionally, some of our chemotherapy patients are readmitted back to the hospital with neutropenic fever or other complications. And there are also the patients who have rapidly growing cancer who are unfortunately not achieving much benefit from the chemotherapy and are readmitted to solve the problems of pain or other difficulties posed by their disease. Many of these patients will eventually elect home hospice, and a few who have extremely complex needs will remain under our care until their death.

All of these patients that I mentioned above--I've had intimate, meaningful discussions with and witnessed crucial moments of their lives. I've laughed with them, met their families, been present before and after physicians give unwelcome news, listened to them talk about what they long for in their life. I've heard the stories of how they met their spouse, how they grew up, how they raised their children. I didn't become their best friend, their mentor, their savior--I was just someone that was there; who listened to them and who felt touched by their humanity.

What I don't know for most of these patients is how their life story ends. I don't mean I'd like the excruciating details of their final weeks; but I'll always wonder if Betty had a few more months to walk along her beloved Yukon River, or if Randy was able to hold that much-anticipated grandbaby.

At the end of that person's the nurse who was physically responsibly for injecting a toxic, nausea-inducing, hair-losing, potentially anaphylaxis-causing agent into their veins, I have to believe that it was all was worth it.

We generally do become informed (somehow) when one of our long-time chemotherapy patient passes away, but to me this is an unknown ending. The story is incomplete. It's like reading most of a book except it's a narrative of someone's life which includes you as a minor character, where you find the last few pages are blank follwed by a big "THE END".

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One extraordinary man recently wrote a beautiful note to fill in those blank pages about his wife who passed away from ovarian cancer. I remember this patient had trained golden retriever guide dogs for years. She gave me some pointed advice about dog training, which I later shared with Andrew and is practical and applicable even to this day. I'd like to share the last few pages from Jayne's story with you.

~ begin letter~

To Jayne's Medical Support at UWMC, SCCA, and Poulsbo

There is a perception that if you recover from cancer you win, but if you don't, you lose. This is not the whole story.

It is this thought that I want so much to pass on to Jayne's medical caregivers as I watch the obvious pain it gave them to have to give us the final news. I am sorry I don't have all of your names. If I did, this page would overflow. But I especially wanat to mention Dr. Greer, Fox, Ellis, and Carlton (and staff) Heidi and Holly at the Seattle Cancer Care Alliance, the infusion nurses at SCCA (especially the one interested in Jayne's guide dogs) and the stafffs at UWMC 8SE and 7SE (including the nurse who played for Jayne on his guitar). I want to give all of you who worked shoulder to shoulder with Jayne throughout her 3 1/2 year illness, some sense of what you gave her.

Two trips to Hawaii with friends and family the most recent in December.

A trip to Lake Tahoe with friends to usher guide dog puppies in training around the casinos and Sierra Nevada surrounds for a week.

The chance to speak at a graduation of a guide dog we raised as he went into service with his blind partner.

A trip to California to visit her sister, nieces, cousins, aunt, and uncle.

Several trips to Spokane and Covington to visit grandkids.

Many reciprocated visits from grandkids.

A girl's weekend escape with 2 of her best friends about which I'm dying to find out but have been repeatedly stonewalled.

A special reunion of guide dogs, retired guides, and puppies in training and their owners and handles at our house just 6 weeks ago.

Plays, movies, concerts, dinners out, laughs with friends, Christmases, birthday parties, Mariners, Seahawks, soccer games, and other celebrations.

And most of all two grandchildren that, but for you, she never would have known.

Dr. Greer plays to win. While the margin of victory is not nearly what we wanted, in the last 3 years there has been a lot of winning in Jayne's life. One of my favorite pictures of her shows her bald from chemo with a granddaughter perched upon her lap beaming her beautiful smile out to all of us.

This is the picture of a winner.

I would wish for all of her caregivers to look at that picture and say to yourselves, "I did that. I helped make that shining moment of vistory and many others possible."

Because you did. We are grateful.

Jayne's husband and family. February 26, 2007.

~end letter~

I am very thankful to this man for writing on those last few blank pages. Although I can't deny I get a little fuzzy-warm hearty feeling from his statement that he thinks that Jayne's caregivers made all of her victories possible, I can't agree with that. I have seen time and time again a determined patient dramatically outlive (despite having extraordinary, compelling complications where other patients have utterly collapsed) physician prognosis. I truly believe that the individual choses their time to die; which means that it's all about the resilience and desire of the patient, not about a textbook of doom prediction.

In my book, the patient--not the doctor, the nurse, or the treatment--gets all the credit for continuing their life in despite the knowledge that their death is near; and achieving what their heart longs for.

I'm so glad to be able to close Jayne's book and know that for her, it was all worth it.


1 comment:

Jen said...

Rae, I enjoyed reading this post so much. It makes me miss the depth of relationship an oncology nurse gets with her don't get that same relationship in PACU or an urgent care. It is nice to know the "final pages" of patients...I always was so thankful for patients who came back to visit when in remission or families who came back after the patient had died.