Outside the Chemo Room, Looking In

 
“You see a room of horribly interrupted lives -- the job promotion that just couldn't be taken, the missed soccer games, term papers that would have to be turned in next semester, maybe next year.”
 
 

A while back, I wrote that Ted Koppel and Producer Elissa Rubin had come up to Hopkins to do some shooting for an upcoming program on cancer for Discovery Channel. Elissa is not only a colleague, but a good friend, and I asked her if she would share her thoughts about the experience. Here's what she wrote:

A couple of weeks ago, I was getting ready to make a scouting trip to Johns Hopkins Medical Center for a documentary we're shooting on Leroy Sievers. The day before we went, Leroy asked me if I would write about the chemo room. He was curious to see it through the eyes of someone who had never experienced it before, and I suppose, more to the point, someone who didn't have to be there.

What struck me almost instantly was that no one really looked sick. People were in street clothes, flannel shirts and blue jeans, carrying purses and computers. There was a woman in a purple cashmere sweater, one man in an elegant business suit. No bathrobes, no hospital gowns. Aside from looking a little tired, no one looked like he belonged in a hospital. Or that their lives now hinge upon what happens in this room, or that each one now exists in a world of prognoses and time limits. None of that was evident. I felt like I was looking around the platform of a metro station, except for the surreal fact that everyone was hooked up to a machine, with chemotherapy running through their veins, killing the cells that are trying to kill them.

Then you look around and think about what it means to come here, every week, sometimes from hundreds of miles away, and sit plugged into a machine for six hours. You see a room of horribly interrupted lives — the job promotion that just couldn't be taken, the missed soccer games, term papers that would have to be turned in next semester, maybe next year. Marriages thrown into shock, children put in the upside-down position of having to worry about their parents. If anything, this should be a place of raw emotion on display — after all, everyone is in the same position and everyone knows what the person next to him is probably thinking and feeling. It should have been a room filled with anger, yelling, objects crashing against the wall — yet no one even looked particularly sad. This was a place of remarkable calm. Maybe because it was a place — the only place right now — that offered anyone any hope. People were here to fight their cancer, to get better, to keep on living. This was the place for the people who have that option — the so-called lucky ones. At least their doctors were able to offer a plan — one that explicitly said, "You do have a chance to beat this, to live longer." This was a room of science and medicine, bright lights, protocols and doctors. Finally, there was an opportunity to do something to a disease that had stripped you of all control.

All of those people, so exquisitely ordinary, looking as regular, as healthy as I do. Sending e-mails. Reading the newspaper. Talking on the cell phone. It struck me there was no reason why I, too, wouldn't be sitting in that chair next year, next month.

As I said, the main reason for my visit to the chemo room was to see the location as a television producer. I wanted to meet the hospital staff, put them at ease about what our cameras would and would not shoot. I was there to look at the light, note the space, listen for potential sound problems. But I was more than just a bit distracted from my job. I was really there because my friend has cancer. And I don't want him to be here. And I don't want him to feel the abstract fear I had, in the real and suffocating way he must feel every morning when he wakes up and remembers all over again what he is facing. But as much as he hates it, as much as I hate it, the chemo room is keeping him alive.

-- Elissa Rubin

 

Comments (Send a comment)

Eilssa,

I'm glad that you are taking a look at cancer from the inside view. There've been plenty of stories on TV about the War on Cancer, talking with scientists and doctors about the big picture. I can't think of any that I've seen that look at what it's like to have cancer, to treat for it, to live with it and perhaps, to die with it. Scary things are scarier close up sometimes, and it's rare to go as close as you have if you don't have to. I think that many people would fear getting too near to Cancer Land, because the conclusion is inevitable. "If it's happening to them, it could happen to me." I'm looking forward to your program.

Sent by Nancy K. Clark | 10:45 AM ET | 12-20-2006

My "lil" fantasy is to have every oncologist nurse and doctor get hooked up to chemo and feel the side effects of the chemicals themselves. I know, pretty sadistic coming out of my innocent blonde brains, but really, when you are actually going through the grueling rigors of chemical warfare in your body, don't ya just for one second want the rest of the world to feel like you do?

Sent by Marianne Dalton | 10:46 AM ET | 12-20-2006

Thank you, Elissa, for helping me to visualize and to understand.

Reading your description made it very real for me. My friend, T (see my comment Nov. 27) was taking her second round of chemotherapy the day before yesterday. I wrote her a letter of encouragement: "Today I'm thinking of you, knowing you're going to the cancer center for your next treatment. What does that mean? I try to imagine, so I can be a part of it. You are in the best hands and your perseverance is impressive."

Sent by Emile Bellott | 11:33 AM ET | 12-20-2006

Ms. Rubin has it totally correct. We put our lives on hold during chemo, but most of us have hope and faith. We try to stay positive even with the chemo room and all the extras that go with it. I am one of the lucky ones because as of last week, I have beaten that horrible cancer monster twice now and am ready to take my life off of hold once more. I pray everyday for those still struggling with this disease and wish you and them health in the future.

Sent by Freida Jones-Dewey | 11:37 AM ET | 12-20-2006

I remember my first trip to the Chemo Room. I, too, was struck by how normal and even cheery everyone was. Inside I was terrified, but outside I was determined to put on a brave face. I was well! I didn't really belong there! I was going to be the perfect patient, so that my cure would also be perfect, so I would "deserve" to be cured of my cancer.

Well, my thinking has undergone some revisions since then. I came to realize that I couldn't "deserve" a cure anymore than I deserved to have the cancer in the first place. That no matter how hard I try, I can't make the chemo work, or make my body respond to the chemo the way the doctors (and I) would have preferred. Perfect behavior is not rewarded in the chemo room. And yet, it was through watching others seem to handle their chemo and their disease that I started to come to terms and even peace with my own.

Sent by Stephanie Dornbrook | 11:40 AM ET | 12-20-2006

Leroy, you are blessed to have such amazing friends; beyond those you have met through your blog. Thank you for sharing your experiences, especially at times when you may be scared and not feel like talking about it. Your courage inspires me and reminds us all that whether this is your first Christmas, or one of your last, we can only experience that day once, so make the most of it. Wishing you and yours the feelings of peace, joy and love that only Christmas can bring! God bless.

Sent by Lisa | 11:47 AM ET | 12-20-2006

When I was at the chemo center last, an elderly lady who I have seen on several occasions arrived. She is very positive and talks constantly to everyone. But on this day, you could tell she did not feel well. She was quiet and asked for a pillow and blanket so she could sleep. By the time I left, she was curled up in the "barcolounger" with a "bucket" under her head and the blanket pulled up high. I think most of us who have been there, done that can always see those who are not as fortunate. Even in chemo, there is a silver lining. The faces in chemo are just like everyone else but a bit more fragile. And, there are no strangers in chemo, just people with a different diagnosis. Best wishes for a blessed holiday.

Sent by Jenene Koegel | 12:01 PM ET | 12-20-2006

Leroy,

Thank you for asking Elissa to write this piece today. Even those of us who are sick with cancer are on the outside looking in when it comes to someone else's cancer. I hadn't had a chance to read the blog at all this week and am just catching up on your news and Im crying yet thankful you're sharing with us. I hope you find peace in your Christmas tree lights and your family (ok, I should have put those in the opposite order. I love looking at the lights on our tree, too, though) over the next couple of weeks.

Sent by Jennifer Haan | 12:03 PM ET | 12-20-2006

Dear Leroy,

I just read your colleagues beautifully written article about the chemo room. The love she obviously has, not only for you her friend, but for all of us that inhabit this planet, oozed from each word. I look outside this very moment and see the ferocious blizzard raging just inches away, only a thin veil separating me from the perilous, swirling snow and freezing cold. If I opened my window, I would be in full experience of the brutality and severity of it all. But I'm not in the elements; I'm insulated within and able to observe the magnitude of its power as it blankets everything in pure whiteness. I know that when the storm moves on, the sun will shine and what I previously judged as brutal will then be seen as majestic, beautiful and symbolic of pure innocence.

I believe this is analogy which can carry through to all of us. We observe the harshness and attacks inflicted on the body - yours is definitely on a rampage, but we try and remind ourselves there is also the observer within that is fully protected and totally unaffected by all which occurs without and for which remains as perfect and pure as the driven snow will seem after the storm has ceased and the reflection of the light &bright rays of the sun glistens on the fresh snow.

I wish for you this season the ability to find the glee that is within you — within all of us — and send you gratitude for the courage and love you've extended to us, seeming strangers on the outside but family on the inside, by sharing your thoughts and feelings on your journey. We send it back to you a thousand fold.

Sent by Sheron | 12:30 PM ET | 12-20-2006

The difficult reconciliation that I faced in dealing with my cancer, was that this was my DNA looking to put me 6 feet under. Not a malformed organ. Not a used up heart, (why didn't we get two, like eyes, ears and kidneys). It is a deep, lifelong, personal struggle somewhat made easier by success.

It is good to know that advances in chemotherapy have largely replaced weeklong hospital stays, the nearby crash cart and the fear of kidney failure with a brief time on the internet, or electronic game.

In August of 1972 I observed Dr. Murphy exclaim "until now all we had was mustard gas". This joyous exclamation was a reaction to initial results from the then experimental cis-platin. No one had ever seen a stage 4 liver carcinoma vanish. Of course the cancer returned but there was six months, six months that just never could happen before. In 1972 we are talking of median survival time of weeks upon entry into Rosewell Park.

Today Cis-Platin continues to be studied. Active research is looking into why testicular cancer cannot develop resistant cell lines in face of treatment with cis-platin. If additives can be found for cis-platin that would increase the number of cancer cell types that cannot develop resistance to cis-platin this old drug may save many lives again. After all, you just need a drug that works. When the drug was first developed is not important.

Every day we survive, that is just one more day in which some new combination of treatments can become available. In Europe they are having success in pancreatic cancer. Researchers are hitting the pancreatic cancer with drugs that attack the cancer in three different ways, all at once. The hope is that the cancer cell cannot overcome three forms of attack. Thus far the advance stage victims are living longer and without the need of pain meds. Reports are that when death does come, it is comfortable. Pancreatic cancer is not known for comfort and the absence of pain.

Go on vacation. Exercise. Eat well. No hard drinks. Your liver needs to be strong for your next round of therapy. A glass of red wine, that is helpful.

In your next round of therapy your doctor(s) may try to use combinations of drugs that would hit the cancer from three distinct directions. Again the hope is that the cancer cannot adjust and thereby survive.

Combinations of drugs have in the past been used to offset the toxic nature of any individual drug. In the past the drugs in the near lethal cocktail would act on the cancer in the same fashion.

Given that latest news from England, one would have thought the Russians would be leaders in using cocktails to fight cancer.

Sent by Joseph Lyons | 2:01 PM ET | 12-20-2006

Leroy and all of the rest of you, who read, write and witness his blog: I am a regular reader and an occasional responder to your blog.

I fell off a cliff Monday when I read about Hawaii, and the next day I was still falling. It seems, Leroy, that your sharing of your cancer experience provides me with a sort of practice (among other things), an early warning system for hard times ahead, as I support my husband in his experience with cancer. Taken by surprise by the depth of my grief at your bad new and unable to form a response, I really felt that Id been shoved off a cliff, one I didn't even want to acknowledge I was standing on. I always read the comments, though, and it was through tears last night that I realized that Leroy's people were weaving a net as I fell, a strong looping fabric of courage, compassion, vulnerability, cheers, advice. They were making it for you, Leroy, but Im not falling anymore. That net caught me, and brought me back to steady ground. Thank you, Leroy, for gathering us together, and thank you, all, for writing. I love being one of you, human beings with a grasp of the possible and dreams of the impossible.

Sent by Ceese Stickles | 5:08 PM ET | 12-20-2006

Dear Elissa,

Thank you for sharing your perspective so eloquently. And to you, Leroy, for writing your daily blog throughout your cancer journey. It has provided me with great comfort during the past many months. My young nephew died this past summer after a 13-month battle with both leukemia and non-Hodgkin's lymphoma. I often felt that you were putting words to his thoughts and feelings that he was not yet able to do since he was only seven.

There have been periodic comments by parents of children undergoing treatment for cancer, but I wanted to comment specifically to today's post as I wondered how different Ellisa's perspective would be if she had visited a chemotherapy clinic in a children's hospital. Any one who has had a loved one go through cancer treatment knows it can be a long and difficult road, but I think it is a much more excruciating experience for parents (and grandparents) to watch their young child go through chemotherapy and all related tests and procedures.

That being said, my nephew was resolute and brave in his approach to his treatment. Whether it was that he had to do during his hospital visits, he simply wanted to get it started and over with. He wanted to do whatever he had to do to get well.

Instead of focusing on the ways chemo and cancer would negatively affect his life, he simply wanted to get well so he could play again and be a typical kid.

Sent by Jen | 11:13 AM ET | 12-21-2006

At my first chemo session, I walked past the cubicles filled with people to the empty one where I would be that day. I sat down and burst into tears, great heaving sobs that took awhile to subside. Although there were a great many moments of awe, shock and worry during my surgeries and treatment, my memory of this first chemo stands out. People were kind I collected myself and the day continued. It was one moment of being face-to-face with my death. It's been five years since that day and I have been blessed with good health so far. My thoughts are with you.

Sent by Judith Nast | 12:07 PM ET | 12-21-2006

Elissa wrote a nice description of what I have experienced in the chemotherapy infusion unit. One thing I noticed as a patient there was that patients there provided support to each other. The rooms were open with five or six chairs in them. There were curtains for when privacy was needed, but usually they were open. If a new person arrived, the nurse always spent extra time, but the rest of the people were always quite willing to share their experiences and helpful hints. At times it seemed like a big family except that we were brought together by fate.

Sent by Jim Bloom | 12:09 PM ET | 12-21-2006

Thanks Leroy.

The following is in honor of my brother, who died early this morning from pancreatic cancer. We all read and learned from both of yours and his writings and words.

December 20, 2006

To our friends and loved ones:

Our Son, Brother, Uncle, Friend and loved one, Scott Swaner, died early this morning, December 20, 2006 in Seattle, Washington of Pancreatic Cancer.

This poem by Dylan Thomas is the one Scott referenced several times in his writings while battling and fighting this wretched disease.

Do not go gentle into that good night,

Old age should burn and rave at close of day

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light.

—Dylan Thomas

Services are being arranged so we can join together and be unified as we both grieve and honor this amazing, unique and extraordinary man. At this time our family wishes to send our most heart felt gratitude, love and appreciation to Kim, Gillian and Ted Scotta??s Seattle family) for their complete, pure, care, love and friendship they gave to Scott consistently, every day since Scott's diagnosis. They never left his side through out Scott's battle and were always ready and willing to care for Scott, whether it was for a chemotherapy appointment, a Pharmacy Run our hang out together and chat. We know there are many others who also helped care for Scott but to these three special, determined and long suffering friends, we want to say we love you and are forever and will always be indebted to you. Knowing you were with Scott brought us much comfort. Thank you so much.

Our hearts are with you today.

Love,

The Swaner's, The Luna's and the Moore's — Scott's Family.

www.donotgogentle.blogspot.com

He fought and raged for almost nine months. Thank you Leroy for being one of my brothers daily reads and inspirations.

Sent by Sheri Swaner | 12:13 PM ET | 12-21-2006

I have followed your journey here from the beginning. It has become an important part of my life's learning both for myself and my profession in the local trauma hospital. I would like to ask that you please let us know when Eilssa's program will be aired. I would hate to miss it and will encourage friends and family to see it as well.

All blessings to you and yours.

Sent by Cindra | 12:28 PM ET | 12-21-2006

Eilssa's views of the chemo room are very realist. Few who are there appear ill, most all are polite, but under it all, I know the fear we all feel and the tears we cry at home. With all the new meds to prevent the patient from getting sick during the chemo infusion, things seem pretty easy, but when they wear off, things are not so simple.

I have missed this weeks blogs as my husband had to go to the hospital because of sever pain, apparently from the combined radiation, clear back in August, and a new monocolonial antibody, Erbitux have burned his intestines. With such pain, his resolve to get through all this almost faltered. Fortunately, they were able to give him pain management patches and a new anti-depressant, so he is back on course...but not looking forward to the next infusion. I hope others are receiving good care outside "the room."

Sent by Nikki | 11:34 AM ET | 12-26-2006

Dear Elissa and Leroy,

My perspective on the chemo room evolved over the course of my therapy, as I'm sure it has with most others going through this. The first drops of this healing poison that entered my body were in a hospital room, my loving wife at my side and monitored closely by a nurse in the room because of the potential for a dangerous allergic reaction to part of the cocktail. Needless to say, these precautions generated a fair amount of anxiety as I felt the cool fluid course through my veins that day.

But soon the infusions became routine and I started to turn outward, focusing less on my body and taking in the challenges that those around me in the chemo room were dealing with. Compared to most of them, I seemed healthy! There were elderly folks, suffering from a range of other problems besides the cancer. One young woman was on constant pain meds that put her in another world. Some also dealt with side effects from radiation. I had wonderful support from my wife, family, friends and coworkers I was still able to keep working and my health insurance covered most of the bills. So I was blessed in many ways.

My trips to the chemo room were never pleasant but two angels with RN after their names, Susan and Lois, kept my spirits buoyed through the tough times. I imagine that many others have also found their own angels in these rooms, and I hope that Elissa highlights the wonderful and myriad ways that they help us to heal. The medical knowledge, the science, and all that is certainly crucial, but the caring way in which these devoted nurses interact with and support us in this most vulnerable of times is a precious gift that will never be forgotten.

Leroy, I admire your ability to keep writing and shopping and living life through this most difficult of times. I am touched by your writing and soothed by your spoken words, as are so many others. Thank you, thank you for sharing.

Sent by Chip Deutsch | 2:34 PM ET | 12-27-2006

This comment is for Sheri Swaner,

My name is Alex Bissonnette and I am was a student of your brother, Scott Swaner back in 2004. He was my favorite teacher inside and outside of the classroom and I am really sorry to hear about his passing. This past year I was in Japan as a government scholar studing the Japanese language as well as doing a research thesis on the HIV/AIDS epidemic in Japan and only ended up contacting Scott once or twice before his passing, but I never knew he had had cancer. I came back from Japan about 2 weeks ago and today I was going to email him again and so I went to look for his website when all I could find was the tidbit on the Asian Languages and Literature website and was shocked to hear he had passed away. For me, Scott, always was very kind and helped me a lot with my poetry. And it was a pleasure to be one of his students. I took his class because all I needed a writing credit but I wasn't expecting the class and the teacher to be so interesting. I really respect him a lot and I am glad to have had the chance to know your brother. Cancer is a always a horrible things (I have had 2 relatives also die from cancer as well as 1 friend) but I know Scott will not be forgotten, and I am sure his other students like me will also remember him for being the great teacher that he was. Anyways, I know I have never met you before, but I thought that I should at least get this out. I hope everything is well.

Sincerely,

Alex Bissonnette

Sent by Alex Bissonnette | 2:23 PM ET | 10-10-2007

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Leroy Sievers in the Ted Koppel Documentary

A Ted Koppel documentary focuses on his friend Leroy Sievers' "My Cancer" blog and the response it evokes.

 
 
 

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My Cancer will be updated Monday through Friday with posts and commentaries from Leroy Sievers. A journalist for more than 25 years, Leroy has worked at CBS News and ABC News, where he was the executive producer at Nightline. You can follow his story through this blog, his weekly podcast and his monthly series on Morning Edition.

 
 

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