Performance Calendar for Swing a Club: facing cancer

Performances of Swing a Club: facing cancer are not planned beyond the 2005-06 season. If you are interested in having Swing a Club: facing cancer performed in your area, please contact Anthony Roberts: awr@stolaf.edu / 507-786-3622.

2005-2006

• March 3-6, 2006: Central District AAHPERD Convention / Omni Interlocken Resort / Broomfield, Colorado
  (solo & video excerpts of the work)
• March 18, 2006: Kresge Theatre / Willamette University / Salem, Oregon
• May 13-14, 2006: Barbara Barker Center for Dance / University of Minnesota, Twin Cities Campus

2004-2005

• November 4-6, 2004: Wagner/Bundgaard Studio One in Dittmann Center / St. Olaf College / Northfield, Minnesota
• March 18-19, 2005: Bloomington Center for the Arts / Minnesota
• March 24-25, 2005: Scottsdale Community College Performing Arts Center / Arizona
• April 9, 2005: Space/Place Theater / University of Iowa / Iowa City
• June 8, 2005: Media-New Conference / Grinnell College / Iowa
  (solo & video excerpts of the work)

2003-2004

Accolades for Swing a Club: facing cancer

 

 

 

 

Stories of Loss, hope and love (updated June 2006)

"Grief expressed is grief diminished." This quote was offered during one of the post performance discussions of Swing a Club: facing cancer. From my personal experience, I have found this to ring exceedingly true. Below, you will find several stories of life and death, hope and grief, support and letting go. I hope that in reading these stories your healing journey will continue.

Dr. Albert	Lorraine	Tom Roberts
Keith	Duane & Shirley	Matt's Father
Erling	Aunt Patty	Trish's Grandmother
Jenny's Friend	Mary Clare's Friend	Barb
Janis	Lampshade	Jeremy
Harold	Therese	Phyllis
Marty	Nora	Lynn
Jason
share your story / Comments.

 

Father, Son & Prayer
Submitted by: Jason Keeton (jasonkeeton1@aol.com), June 2006

I was in Minneapolis and was able to see my cousin, Sarah Steichen, perform in Swing a Club a few weeks ago.  This was the first time I have attended a modern dance performance.  I was very impressed.  More so, I was impressed on how well the subject matter was presented and how it really made me think about life.  Several times during the performance I found myself reflecting on my own experience with cancer.  My father passed away from cancer when I was sixteen years old.  I still remember watching him struggle to take his last breath and dying with his eyes wide open.  His brother then walked over and closed his eyes with his fingers.  I remember my younger sister running out of the hospital room crying and my mother chasing after her.  Eighteen years later, I still remember that exact moment.  For me, even harder than watching my father pass away, was fourteen years later, when at age of thirty I was diagnosed with a rare form of cancer for which there is no treatment.  Medulary Thyroid Cancer.  It doesn't respond to radiation or chemo; all they can do is just cut and hope they get it all. 

After knowing first hand what I went through as a child and having two young daughters of my own, I could not fathom the thought of my daughters growing up without a dad around. 

When faced with such overwhelming odds and having everything so completely out of my control, I did the only thing I could think of.  I prayed.  Anyone that wants to be skeptical of my course of action I can bet hasn't been in my situation.  A situation where the only thing left is prayer.  I prayed so hard that I cried. 

I know that prayers are not always answered.  But mine was that day.  Today, almost four years later, I am pretty much cancer free, and I now have three daughters with one more surprise on the way.  I am not only healthy, I'm healthy enough to pass a FAA first class medical, and continue my career as a commercial airline captain. 

We all tend to get wrapped up in our little troubles in life.  Thank you for conceiving and giving a performance that lets us reflect on the things in life that are truly important. 

I really enjoyed the performance of Swing a Club.

 

Gladys*- (Events took place about 12 years ago at Freeport Memorial Hospital)
At our first meeting Gladys was hospitalized for shortness of breath. She had been admitted by a family doc who ordered a number of tests, including an abdominal CAT scan, which revealed ovarian cancer. We took her to surgery and removed most of the cancer we found in her abdomen. Further therapy was expected, probably chemo. Something about Gladys…she was the matriarch of a farming family. Her granddaughter called her “the rock” of the family. Four days after surgery she had a recurrence of the shortness of breath. The family doc suspected a blood clot in her leg and put her on a blood thinner. Partly as a result of this treatment, she began to suffer from gastrointestinal bleeding. She was still short of breath, had gotten anemic, and would probably need a blood transfusion. She was admitted to the ICU, and by the next day appeared very weak and was only marginally responsive. There was a question about whether to transfuse her again. I wanted to press on, giver her blood and maybe transfer her to the University hospital in Madison. The family doc went to go talk to Gladys’s family, and they decided it was time to let go. The other doc, Gladys’s husband and I decided together in the room with Gladys and prayed. We left Gladys and her husband together, and she died that night.
I suppose I look back most on my early optimism, even after it was quelled by early frustrations, my desire to not let go. And I will remember that “angel in my midst,” the family doc who could say “I know these people and this situation” in some regard. It taught me my limitations, and the necessity of recognizing that there are more important things than life. You learn as you go in the discipline of medicine to deal with loss. I think she was the first patient I had that died postoperatively.

Sarah*- (Events took place approximately the same time in Freeport)
Sarah was a widow who lived with her son, who was unmarried…I would speculate even slightly dependent…but it worked for them. She had a mass in her pelvis, and an operation found cancer in her right ovary that had grown down into the muscle by her pelvic wall and near her urethra. Because of the placement, not all of the cancer could be removed. In post-op she asked what almost everyone asks, “What was it?” “A tumor.” “You mean cancer?” She wanted a prognosis, as people do. I told her 6 months to a year if she went for treatment, perhaps at UW. That was the last I saw of her. Until three years later, when I ran into her in the hall of the hospital. “You remember me?” “Sarah. Yes. Hello.” “You’re already three years wrong.” “I’m very grateful for that.”
That experience taught me that every cancer’s different. Every patient’s different. Every family’s different. And, as a consequence, the dynamics of the whole process of a cancer are always unique.
*names are false to protect confidentiality

Things I've Learned
One of the things that’s always…it takes a long time I think, to learn how to tell someone distressing news. I’m very often left in the position that I’m the first one to know that someone has cancer, and being in the position to talk to someone about a malignant diagnosis (sometimes in a appt. after a biopsy or during rounds) there are a few things I’ve learned.
1. It helps to know them reasonably well; you know how to present information. Usually I open conversation with a general statement. “The news I have isn’t the news I’d like to give you.” Often followed by a “What do you mean?” Then it becomes an issue of language. The key is making sure someone truly understands what you’re talking about. You have to give accurate information without overwhelming them, realizing that denial is part of human nature. When they’re ready they’ll ask you if it’s cancer. There are two words that are pivotal in this conversation: cancer and malignant. They soak in slowly. After that point you try not to say too much, except “these are probably the next steps…”
2. You have to keep people empowered. I like people who are in the midst of struggle to know what they’ve got and to have all diagnosis and treatment done with their personal knowledge, maintaining their autonomy. This is important from more than just a medical/ legal standpoint. It’s important from the standpoint of healing; people need to be involved. There’s a big difference between curing and healing. You can cure someone completely without ever healing them. You can live in fear through 20 years of remission or you can have five years of life even though you may know the end is coming. It’s hard to feel like you’re “in control” of your own life when something else is “in control” of your body.
Cancer is a biological accident. It’s maladapted. When the sufferer dies, so does the cancer. It’s nothing more than a tissue that’s quit respecting its borders.

 

Keith Kriegelstein is one of my husband's (Mark) best friends, and he was in our wedding. Keith is also a cancer survivor. He was diagnosed with Hodgkin’s Lymphoma during his senior year in high school. Hodgkin’s Lymphoma is one of the groups of cancers called lymphomas, a general term for cancers that develop in the lymphatic system. Hodgkin’s accounts for less than 1% of all cancer cases in this country. It occurs most often in people between the ages of 15 and 34, and it is more common in men than women.
Keith was a high school athlete playing basketball and football, when he began to feel out of sorts and extremely tired. He went to the doctor and through testing they discovered his cancer. Keith missed half a year of school because of treatment; however, he managed to graduate on time. It was also a huge loss for him not to be able to play both basketball and football his last year in high school. Because of the spread of his cancer, they had to remove half of his liver and a lymph node in his neck, which left scars both on his abdomen and his neck. He also had to go through chemotherapy. For the rest of his life he will have to be tested often to make sure that the cancer has not come back. He is getting married this summer (August 2004) to his high school sweet heart. They had actually broken up in high school before Keith was diagnosed with cancer.

 

In talking to my father, Joseph Klopchin, recently we got on the subject of what he believed caused the cancer in my grandfather and two of his four brothers. My father believes the cause lies in a lampshade factory that all three worked in when he (my father) was still a young boy. Out of the five brothers, the three who worked in the lampshade factory all developed cancer and the two who didn’t work in the factory never developed cancer. My grandfather was initially diagnosed with bladder cancer, which spread, eventually killing him. Uncle Joe was diagnosed with lung cancer that spread and killed him. Uncle Pete had both colon and prostate cancers and is still living. My father recalls dropping off lunch to my grandfather and not being able to see the other end of the room because of the smoke that enveloped the room. The smoke was from the huge welding machines that they used to weld the various parts of the steel lamp shade frames together. The steel was coated in oil to prevent rusting but produced a smoke when the welding machine struck it. My father also recalls not being allowed in the basement of the lampshade factory for long periods of time because of the noxious fumes given off by the vats of aluminum paint that they dipped the frames in. There was absolutely no ventilation in the building.
The situation surrounding Uncle Joe’s cancer is the most suspicious. My Uncle Joe was the most "in shape" person you would ever meet. He was drafted by the NY Yankees out of high school and still holds many of the track records at Clarkstown high school in Rockland County, NY to this day. He stayed in shape his entire life by playing hockey, tennis, baseball, etc. You name the sport he played it. My young cousins and my husband couldn’t wait to take on my Uncle Joe in various sports. He was very competitive, even though they were 40 years younger. My Uncle Joe was the person who taught me to shoot a basketball. How surprised everyone was when he was diagnosed with lung cancer. How could this happen to an extremely in fit person who never smoked? He did what he had to regarding radiation, chemo, etc. and for a time the cancer seemed in check, but then he began forgetting things and at times seemed confused. My father took him to Columbia Presbyterian hospital in NY to see a cancer specialist, and was then informed that the cancer had traveled to his brain and that we should make him comfortable. It took only a few shorts weeks for his body to literally waste away. We visited him many times during these last few weeks, and it was amazing to see how he would forget what year it was one moment and be fine the next. In what seemed like only a week he went from sitting in a chair to being bedridden. He was taken care of by a hospice nurse, who stayed with the family and was absolutely wonderful. Unfortunately, this was all occurring a week before my cousin, Will, was to be married in Vermont, and my extended family from Vermont had made a few trips from to visit with my Uncle Joe. During my extended family’s final trip back to Vermont my Uncle Joe passed away…the day before my cousin Will’s wedding.

 

My stepfather was going in for his yearly physical in October of 2001 when he discovered he had prostate cancer. His blood test showed a PSA count to 5.2, just a little over the normal 4., and up from the 3.7 it had been previously. His physicians suggested that he have a biopsy of his prostate. The pathology report indicated a small amount of cancer in one of the six prostate cells. His doctors told him that he had a mild case and had several options because of that. He could either a) do nothing and monitor it, b) undergo on of two types of radiation, or c) go through surgery. He went through a lot of research before deciding what course of action to take. Because of his age and the mildness of his particular case they suggested that surgery wasn’t necessary. Because the side effects for surgery were greater than for radiation, he decided to either wait or go through a radiation program. After a bit more thought he also decided to rule out waiting. He didn’t want the thought of it on his mind. He wanted to get it over with and go on and live life, and so radiation seemed the appropriate route.
During his research he became very interested in internal radiation, or seed implantation. In seed radiation, about 130-150 seeds are inserted through a needle in a circular fashion around the specific cancer cells. Unlike external radiation where the radiation takes place all at once, the seeds go off at different times over the period of about a month, so the effects are more gradual and side effects are not as intense. The biggest deciding factor for my stepfather was convenience. With seed implantation there is just one procedure and check ups. With external radiation the patient must come in every day for a designated period of time, for my stepfather it was estimated about 40 days, and for 10 minutes the patient would undergo radiation. On Friday, March 13th, 2002, my stepfather went in for his seed implantation. He went in to the operating room at 10:00 in the morning and was out of the hospital before lunchtime and was back at work that afternoon.
His side effects were very minimal. He did not experience any of the expected side effects besides fatigue. The fatigue started exactly one week after the procedure and lasted about two to three weeks. He would become tired at around 2 or 3 in the after noon and go and take a nap.
He described himself as feeling “punky” and “out of it”. His doctors put him on three drugs. He was prescribed a mild steroid, antibiotics, and a drug called flomax to help urinary tract. In addition, he was prescribed viagra for awhile, but has since stopped all medication besides flomax. The only other effect of the treatment actually arrived from the anesthesia that was used to put him under. The day following the operation he woke up with a case of hiccups, only these hiccups didn’t go away. In the afternoon they became almost violent. When, at 11:00 that night, they still hadn’t subsided, they called the doctor. Apparently hiccups are occasionally a side effect of the anesthesia. He was prescribed a tablet and they stopped immediately.
Now, almost 18 months later, my stepfather feels normal. “I never had any doubt I was going to be cured. My case was so mild, and I went to the best around” he told me. When I asked him if he had to do it all over again, he replied “I wouldn’t have changed a thing.”

 

A good friend of mine descends from a long line of relatives with various types of cancer and diseases. Some of these relatives were very close to her and others are just relatives by blood. The following is her long list of relatives and their cancers or diseases:

Since this many of her relatives have had these forms of cancer or disease, she is constantly worried about her own health. Her parents have not been diagnosed with any form of cancer, nor has she or her brothers. That’s not to say that she has not been directly affected by their illnesses. For quite some time she struggled with following her dream to be a musician or entering into the genetics field. She felt learning about genetics would shed some light on the cause of all these forms of cancer in her grandpa’s generation. She could determine whether or not they were actually genetic, or if they were all, coincidentally, exposed to something in their lifetime. And ultimately, she could know if she, her parents, or her brothers would also eventually be diagnosed. She chose to study music after all, but still wonders about the probability of cancer in her own generation.

 

     Early this past spring, my mother was diagnosed with ovarian cancer. She’s 49. Within weeks of the initial diagnosis, she checked into the Mayo Clinic, endured a complete battery of tests and ultimately received a complete hysterectomy. This kept her in Rochester for about 3 weeks. Both she and my Dad remained fairly upbeat throughout the process, but were definitely glad to get home.
     She’s now into her fifth chemo treatment, and the battle to produce white blood cells (to ward off infection) has begun. Each chemo treatment attacks the remaining cancer cells, but also, unfortunately, kills off some of her white cells. She’s been receiving injections since the second week, but has had to postpone a few chemo treatments because her count is so low. During this time, she is to receive no visitors and cannot spend any length of time anywhere but her house. A possible return to work – and to the kids she loves (she’s a school librarian for grades K-12) – has been put off until at least Thanksgiving.
     All in all, she’s doing OK. She looks like my grandma did right before she died, but that’s fine. She puts on a pretty brave face, but I know she’s terrified. Probably almost as much as my Dad. To be honest, it almost looks like he’s been diagnosed with cancer, too. He’s aged 30 years in the past 6 months, and I sometimes wonder if this has almost been harder on him than her.
For me, the most challenging thing is not being there. I live 9 hours away by car, and really am of no help to them whatsoever. Can’t help with the dishes, can’t mow the lawn, can’t drive her to the hospital, can’t make dinner, can’t go to the library to bring her new books or magazines, can’t putz with the washer to make sure it’s running right, can’t help either one of them do anything. I can and do pray, but it’s still not the same as being there.
     It’s tough being so removed. . . easy to pretend everything is OK and she’ll be OK and life will resume its normal speed and direction once the chemo is over. I know it’s not that simple, but it’s a comfortable delusion to entertain.
Diagnosis? Hard to say, exactly. Somewhere along the road a doctor has made it clear to my folks that she has a definite battle on her hands, that this is NOT something that will just go away. I think they both have come to grips with the fact that she may not be around for another Christmas, birthday, or summer trip to the Cities. Both of them have been very careful not to say too much to “the kids,” but I think both my sister and I have a pretty good idea that this is for real, and this is serious.
**choreographer's note: Each time Chris and I crossed paths at St. Olaf, I anxiously awaited an update on his mother, and he always obliged. Chris took a position with another firm a few years ago, so I lost contact with his situation and his mother's cancer. We ran into one another again in December 2003, and I found out that his mother had passed away six months prior to that. I can't thank Chris enough for his generous and ongoing sharing of his story. His was the first I received and the one that I had followed most closely. Through its unfolding, I have also begun to heal and let go of that which can be.

 

The primary reason I moved back to Minnesota when I did was to move in with my grandmother, Nora. She was diagnosed back in 1993 at the age of 83 with ovarian cancer, which manifested in her as a "splatter cancer" - countless spots all around her abdominal cavity. She had surgery and then chemotherapy (Tamoxifen, I think), which caused her to lose her hair and her energy. Gram was always a little careless about her appearance (slips peaking beneath skirts, etc.) but oh so careful to set her hair in pincurls every night. She had beautiful wispy, pure white hair that she would put up in a bun every morning with many, many bobby pins. She grieved the loss of her hair, but gamely tried a ghastly gray wig for some months, sometimes wearing it backward to the consternation of her daughters-in-law and delight of her grandchildren.
Before cancer, Gram was the most vibrant person I knew. She wasn't frenetic, she was just bright, like a clean lake on a breezy summer day. After her hair started growing back (thicker and curlier this time around!), she regained a little bit of her energy around the house, but became reluctant to leave the house except for church on Sundays. In 1997, it became obvious that she was having a harder time cooking for herself and taking care of daily living type things. Her cancer markers (CA-125 blood test results) were going back up. So I packed up house and cat and moved in with her for the last sixteen months of her life.
I dealt with the medications, the doctor visits, as well as home and hearth. I didn't realize how lonely I would be, but that got to be okay -- cancer and dying is a lonesome thing, I think, even for the people caring for the person with cancer. The hardest part of living with a person who was living with cancer was giving up MY need to control her life, her dying, her illness. I struggled with her desire to quit eating and my desire to "keep her alive" (as if I could). I couldn't comfort her as she mourned the loss of her energy and memory. Once I gave up and let life be life, everything became simple, in a way. We looked at pictures. I listened to stories. We sat together in silence. I quilted while she slipped in and out of consciousness.
I learned more about morphine and cancer and bedpans and stuff that no one wants to know about, but the thing about being with someone who is dying isn't the stuff you can do or can't do -- it's in the being with them, keeping company. And it was beautiful.
Nora Margrethe Ulring Preus Rogness died on October 16, 1998, at 1:45 p.m. surrounded by family, in the music room of her house. I was lucky enough to be born her granddaughter.

 

I lost a dear friend and mentor to ovarian cancer in February of 2000. Lynn was a liturgical weaver and the first woman I ever met who made her living as an artist. A woman my mother's age, who had known me since I was eight years old, she was a one-woman cheering section for my graduate studies in piano performance -- the kind of person who would (and did) stick a $20 bill in the mail every now and then so I would always have a little spare change. When her cancer was first diagnosed, she successfully fought it into remission with chemo and radiation, and went back to her work on a Ph.D. in arts education. The cancer came back quite suddenly in late autumn of 1999. I'm not sure whether it had metastasized or not, but it killed her in a matter of weeks. I still cry when I think about this. Part of the reason her death hit me so hard was that I was experiencing the worse of my hand injury at the time -- I couldn't play, couldn't write, couldn't drive, and didn't know whether I'd ever be able to use my hand again in any way. The sermon at Lynn's memorial service was about the times when God turns his/her face away. It seems unbelievably unfair and unjust to me that women of Lynn’s artistic vision and grace would lose her life in her early fifties in such a senseless way. I guess until her death I'd managed to maintain a childhood illusion that God would protect the good people ("fools and artists," I once heard a person say).
She was buried wearing a necklace she had made out of pen caps in the style of Native American silver/turquoise squash blossom jewelry. I remember this because, although her face was waxen and lifeless, the pen caps practically glowed with a leftover halo of her energy and creativity. They remind me that while cancer can take the body of a loved one, it can never kill his or her legacy and love.

 

I was diagnosed with breast cancer in late February, 1993. I had gone to my personal doctor in the morning because I had found a lump in my breast and after he had no success with a needle biopsy, he made an appointment to see the surgeon at the clinic that afternoon. When I spoke to the surgeon he scheduled me for a biopsy first thing the next morning (7:00 a.m.). His parting words were "I'm sorry, but I'm pretty sure it's cancer." He asked if I was alone and I answered yes, but that I was OK, not to worry. And I was OK, until I got in the car and started the motor. Then I started sobbing and couldn't stop. I sat there, crying in the parking lot for about 10 minutes, then decided I'd better pull myself together. I drove as far as my sister's house, only about five blocks, and stopped there to recover a little. My poor sister couldn't figure out what was wrong, because I was crying so hard I couldn't speak. Finally I choked out that the doctor had scheduled me for a biopsy in the morning and had indicated that he was pretty sure the lump was cancer.
My sister volunteered to drive me home, but being a stubborn Norwegian who can take care of herself, thank you, I insisted I could drive. When I finally left I was in control enough to start thinking about what was happening. When I got home, I started to cry again and my husband was wonderful. We'd been married for nine years, a second marriage for both of us. He held me and let me cry and kept saying over and over that everything was going to be OK. He never stopped saying that for the next six months.
The biopsy proved the surgeon was right and I went to a great oncologist who said we'd fight aggressively and that the outlook was good that I would make a full recovery. I made the decision to skip the mastectomy after two days of thinking harder than I have ever thought in my life - before or since. All the while, my husband kept saying whatever I decided was fine with him and I could tell he meant it. When my treatment plan included four weeks of chemotherapy in Northfield, and 30 radiation treatments at Abbott-Northwest in Minneapolis, my husband kept saying that it wasn't bad, that we'd handle it. Like kids waiting for Christmas we crossed off the trips for radiation and celebrated after ten were gone, then twenty and finally all thirty.
My husband had recently retired when this happened, so he was happy to accompany me to every treatment appointment and even made them fun. I'm convinced that his unfailing optimism, support and understanding are some of the reasons that I am still cancer-free eight years later. He never let me feel sorry for myself, insisted that our life remain as normal as possible and kept me laughing. I'm not sure how things would have turned out without him, but I'm so happy that I didn't and don't have to know!
My husband's sister found out she had breast cancer at almost the same time as I was diagnosed with cancer. She died about two years later. I think this makes his optimism and hopefulness even more extraordinary.

I could share at least part of my story related to cancer, which is ongoing. This has been a roller coaster ride to be sure, and I have no idea yet when it will end. I have an (x) girl friend who I never stopped loving and almost married, but after multiple breakups and living together for a year, we finally decided this was probably not meant to be. That was about a year and a half ago, and shortly after she was diagnosed with stage four lung cancer. At the time they gave her only 11 months, so there is something to be thankful for, but now it has now spread to additional organs, including her brain. She has been going everyday for radiation the past 6 weeks and is about ready to go back to chemo. Our 3-year relationship was rocky to say the least, but our connection was equally as strong to have survived through so much trouble. Right now the steroids have made her feel depressed and bloated, but I understand she will be able to get off them later this week. Janis.....always was and still is a beautiful woman. This lung cancer has been particularly hard for us to explain considering that she was never a smoker and has lived a reasonably healthy lifestyle. Unfortunately she lost her long, pretty red hair this summer, but she has dealt with that reasonably well too, and now wears a wig. Janis is extremely proud, maybe to a fault, but that also came honestly from a difficult personal history. In my heart I knew something was not "right" in the relationship, but I also knew that she loved me like no other- and still does. Breaking up with her was the hardest thing I ever had to do. I am now convinced that this evil which has been growing inside her for some time contributed in some way to our problems during the relationship. At this point all I can do is to be there for her and offer any comfort that I can. Her good days are unpredictable, and I so very much admire the strength which she has been able to find. I also thank God for the granddaughter who has given her so much happiness these past two years.
Janis is not a particularly religious person, but I do know that through this terrible trial she has found a deeper profound side to her that perhaps she never knew herself. We failed as a couple and now her body is breaking down, but it was never for a lack of love. We tired so hard. Over and over again. At this point it probably is good that we never married, but in our hearts we both feel as if we had. This is a piece of my life that I doubt I will ever understand.

Janis' Story Update: 12/13/01
A brief follow-up on my story to share the news that my friend, Janis, passed away yesterday afternoon. Thank you again for your effort in this project. Somehow it makes the grief seem less isolated.

My father, Harold Ladd Smith, Jr., was born and raised in Vermont. For his entire adult life, he worked for Eastman Kodak in Rochester, New York, first as a research chemist and then in management where he became a vice-president. He died in 1977 at age 61 as a result of cancer. Unlike many families who deal with cancer, our family had only a few days. Dad entered the hospital on March 12 after experiencing severe internal pains. Exploratory surgery revealed widespread cancer. Because of the nature and scope of the cancer, surgery was not possible and other therapies were not fast enough to do any good. Dad died two days later on March 14. The autopsy revealed that the cancer had begun in the appendix and then spread to other organs.
We were glad that Dad did not suffer, but had to deal with losing him so quickly. It was at a definitive time in all of our lives. Both my sister and I were in our last year of graduate school and had just accepted jobs. My brother was a senior in college. We have on many occasions wished that Dad could have been with us during at least part of our adult, working lives and known his grandchildren.
My mother, then 55, was left a widow. She and Dad had been planning on what they would do when he retired - dreams that never came to be.
My mother and mother-in-law are both cancer survivors, so cancer has had a significant impact on our family.

 

My husband was the typical, healthy guy - had been a high school athlete, played league basketball for many years, then turned avid golfer. No health problems. Then, in early 1995 a general lack of energy, one night woke up drenched in sweat, loss of weight, persistent cough. Finally, saw his doctor and was diagnosed with adult onset asthma. As spring turned to summer, condition worsened. Went back to doctor - night before appointment had blood in urine.
CAT Scan showed tumor in kidney - renal cell cancer. Surgery to remove kidney was successful. Tumor removed was the size of a nerf football. Biopsy of surrounding tissues showed no cancer. It was thought that the cancer had been encapsulated in the kidney and he appeared to be cancer free. He (Marty) regained his health quickly after the July surgery. We hiked Harney Peak in the Black Hills on Labor Day. All was well. Life was good - never better. We actually appreciated the experience because it made us appreciate life, each other, etc as never before and certainly put things in perspective for us. All was well until December of 1996. (We had sold our house in Eden Prairie and moved to Northfield in June of 1996.) We were traveling - a driving vacation to Las Vegas (he was meeting relatives to play golf) and we were seeing country not seen before, skied in Telluride, toured national parks and monuments. We left home the day after Thanksgiving and planned to be back about a week before Christmas. We were on our way home, visiting national parks in Utah when he had an attack. Doctors in emergency room in Panguitch, Utah thought kidney stones. We got back to Minnesota and scheduled a CAT Scan. The cancer was now in his adrenal glands. The prognosis was not good. Renal cell cancer does not respond to radiation or chemotherapy. Choices were to do nothing and let the cancer progress or try to get into a clinical trial. We researched and found the best clinical trial for this type of cancer to be at the National Institutes of Health in Bethesda, Maryland. Biological therapy - make the body fight the cancer cells. We went out to learn more about the program and Marty was accepted. Once accepted, patients were randomly put into one of three categories. This was not experimental. It is proven to work, but researchers are trying to find the best way to administer dosage and the best dosage. I had read about a doctor who was having success with biological therapy (Interlukin 2). I met him when he was assigned to my husband's case. I felt that we had found the best care possible. The doctors in MN will not administer IL-2 in the dosages needed because they don't know how to deal with the side effects. We made three (or four, I'm not sure now) trips total to Bethesda. One for evaluation, the others for treatment. We were there for a week to 10 days each time. Marty was in the group that received the highest dosage (most dangerous, but also best chance for long term cure) administered intravenously. He spent most of his time there in intensive care. The care there was wonderful, the nurses caring and compassionate. I met lots of people with lots of problems - seems that no matter how bad things are you can find someone else whose troubles are greater.
No room for feeling sorry for yourself. And, I saw many "miracles." My husband was not one of them, however. His cancer was still there, by this time in his bones and lungs as well and the treatment had destroyed his body's ability to produce red blood cells. He became anemic. We were sent home. There was nothing more to be done. He had countless transfusions. Home health nurses who did the transfusions were also excellent. For the most part we were on our own. The doctor here was very clinical - not always telling us what we needed to know. The pharmacist was a better resource - good at letting me know what to expect next, etc. He was one of the very few people to speak frankly with me.

My husband and I tried to be strong and positive for each other - never really expressing our fears even after he was bedridden. I wonder how we kept hoping! So we never really talked the way we should have, but we did come to appreciate things that we would normally take for granted. The sun shining in the window to warm him, a gentle breeze, etc. So there was good mixed with the other. Well, I am going on and on. I learned to give him shots (me who had fainted when I got my ears pierced!). He was not able to receive hospice care because he had been getting blood transfusions. By this time he was eating next to nothing. Finally the day came in August, he was coughing up blood. I called the ambulance - not because of urgency, but I could not transport him without help. He died the next day in the Northfield Hospital.

Wow, lots of memories. One of the most difficult moments - my daughter, a recent college graduate had been offered her "dream" job after a year of looking- pachyderm keeper at the Birmingham Zoo. She had been living at home and my husband insisted that she take the job. She packed up her truck with her belongings and her dog. She said her good-byes to her dad - both of them knowing that they would not see each other again. This was in mid - July; he died August 7, 1997. Another of the most difficult was when I had to call her at the zoo and let her know that her dad had died.

I am very proud of my children. My daughter was 26 at the time and my son 24. It has been difficult for them. At first I thought nothing could be worse than losing a spouse; but I have come to believe that losing a child would be worse yet - and losing a parent at a young age - or a sibling - all great losses.

So dealing with the cancer, watching a loved one die - and not an easy death (but thankfully we were able to control the pain pretty well), grief, loneliness (this was much worse than I could have imagined). But, life goes on. For months, during my husband's illness and after his death my first waking thought was "how will I get through this day." And then one morning, I woke up and wondered what the day might hold, what nice unexpected surprises it might bring - perhaps an especially pretty sunrise, or someone holding a door open for me. The little things were still important and a delight.

I think those of us who survive such an experience might have a different outlook on life. One that I am glad to have, but that was acquired through much pain. I still get caught up in the everyday hassles of life, earning a living, doing the laundry, etc, etc. - but I do try to appreciate each day and those I love. We don't know what tomorrow holds; life is precious - we must cherish it and one another.

 

It began with a call, September 30, 1995. We exchanged the usual salutations. I could tell something was wrong. When I asked him how he was, he said, “Not good.” (Our mother used that exact phrase, the exact tone, when she was dying.) “I’ve been coughing blood.” In my date book, I wrote down “coughing blood,” under the date, as if I’d forget it. “I think it’s cancer.”
A week later, he called back. I wrote down, “Inoperable cancer. No chemo, no radiation, no surgery. Three months.” Beneath that were words I had written earlier in the day: “rubber bands.” He started crying. Did I tell him I was sorry? Did I yell, “That’s what you get for smoking, you asshole! Didn’t I tell you to quit? Didn’t I tell you what my wife told me in 1975, when I was considering whether or not to quit? Carol said, ‘In twenty years, Alvin, you’ll have lung cancer and you’ll wish to hell you had quit.’”
“I can’t believe it,” he said. “Three months.”
I read Raymond Carver’s poem to him -- “What the Doctor Said.”

 

My brother, Tom, was getting radiation treatments for multiple lesions in his brain and a massive tumor in his spine. One day, during a follow-up appointment, Tom asked his radiologist how long it would be before he would be able to swing a golf club. For the past 25 years Tom had been going on a yearly golf trip with several of his friends from college, appropriately known as “The Good Ole Boys”. This year’s trip was only three months away, and Tom obviously wanted to make sure that his cancer was not going to get in the way of his walking the links with his buddies.
The radiologist, however, told Tom that the damage to his spine would more than likely take a year of healing and recovery.
Back at home, after the appointment, I went in to check on Tom with my sister, Reece, who had arrived with food for lunch. He was lying on his bed, and he was crying. I couldn’t recall the last time I had seen him cry. Reece and I took his hands, stroked his head and asked him if there was anything we could do. Tom shook his head, and said that he was okay. He said he just didn’t think it was going to take so long to recover from the cancer, and that he wanted to be playing golf in three months. I didn’t tell him that my prayers were not for him to be able to play golf, but for him to simply be alive in three months. Tom didn’t make the golf trip with the “The Good Ole Boys”. He died less than six weeks later.

 

My father is a retired oncologist, who was among the early people (1945ish-1975ish) specializing in blood cancer research & treatment. Most of his patients died from the diseases he treated. For many years, I could never figure out his stoic personality. He had a great, achiever's public face but little warmth or close contact with we, his family members. More years of stories helped solved this puzzle. He looked at death each day, fought it constantly, and knew how inevitable but arbitrary it could be. I remember in particular how one night he came home angry for a change and not as stoically rational as usual (or full of wisecracks to deflect real emotions as was his other mode). He had been treating 2 patients that week.
One was an elderly man had done very well with treatments and had fought off cancer for a decade but complained bitterly and constantly about his fate. The other was a young man with a rapidly progressing fatal form of cancer. He showed tremendously good spirits and acceptance of his situation despite his youth and marriage and two young children, whom he deeply loved. My father thought that the 2 men should exchange dispositions or perhaps circumstances. He was angry at the elderly man and his attitude and the fickleness of fate that would strike down a young person in that individual's prime and let an elderly person live on in bitterness. My father, himself, has survived a bout of colon cancer and is doing well now at age 84, fighting off death (I've long suspected) as he did all his life for the sake of others.

This is the first time I have written about this experience, though it took place 30 years ago.
The most challenging aspect of dealing with my grandmother’s cancer was the fact that I could not talk to her about it. She had colon cancer and surgery for that which was successful. When the cancer spread to her lungs, her doctor told the family she was not to be told. Her pain she attributed to a problem with her shoulder.
All other family members descended on her during the weekends, which took care of their needs. It wore her out. I visited my grandmother during the week, which satisfied her needs. I do not have memory now of all the conversations we had then.
Other existing circumstances which affected me at the same time:
My mother told me she was going to tell my dad she wanted a divorce after his mother died. I am the oldest of five children. I was 7 months pregnant with my first child (first great-grandchild) and planned on giving it up for adoption at birth. My grandmother said she wanted me to let her raise “little Johnny or Susie” for me, even though she was so ill.
I never had the impression that I was a favored grandchild, yet my grandmother chose to speak with me about personal and serious topics. An example is her loneliness since my grandfather had died 2 years before.
When my grandmother became unable to care for herself, she called my dad and asked him to bring me to her house. When we arrived she was lying on the sofa in a very weak state. She had not eaten for two days and asked me to make her toast and coffee. As she ate she told me it was the best toast and coffee she had ever had in her life. She needed to go to the hospital, but asked me to give her a bath first. This was a very tender experience.
When we arrived at the hospital my father went with her to get settled in her hospital room. I stayed in the waiting area. My father came to me and said my grandmother wanted me to go to her room. She was settled in her room and seemed relaxed. She wanted me to polish her nails, so the next time I went up there I did that. She had never done that in the time I knew her. I visited her during the week as I usually would be talking to her and putting ice chips in her mouth for moisture. Her breathing was laborious and through her mouth only.
About a week later, on the weekend, I decided at the last minute that I needed to see her.
Her lips and mouth were very dry and she was very weak with her eyes closed. When I got to her room, her bed was surrounded by family members. People moved back to let me get next to her and my uncle told her I was there. I asked her if she wanted me to put some ice chips in her mouth. I put my right hand on her cheek, leaned in closer, and asked, “Grandma can you hear me?” and she stopped breathing. I know that she had been waiting for me.
My father was the only child who was not there. I went to the front door of the hospital to wait for him because my mother had gone to get him. I had to tell him she was gone. My father and I were the ones to go see my great-grandmother and great-aunt and tell them their sister and daughter-in-law was gone.
I still think about and miss my grandmother, but this experience is a great comfort to me.

Cancer…..I knew something was wrong so I wasn’t surprised when the doctor told me I had it. My husband cried, but I was relieved that it (breast cancer) had finally been detected.
They tell you to look for a lump that feels sort of like a knuckle, but I’ll tell you to look for anything that wasn’t there before. “Thickened tissue” is the term used when my cancer was detected. It was June and time for my annual physical and I mentioned to my doctor that during a self-exam I found hard area (not a lump). The mammogram didn’t show anything. Could the mammogram be wrong? But there was no doubt by the look on his face that he found what I was talking about. He scheduled a fine needle aspiration (biopsy).
The biopsy took place in July and the procedure took five samplings. We waited for the results, the doctor came, he told us the test did not find any cancer and we were happy. On the way home I thought, “What if they missed the lump?”
In August, my cousin died of breast cancer. While I was going through the tests I was also watching her, five years younger than me, die of breast cancer. She had first been diagnosed when she was 37 years old and went through therapy – only to have it return five years later. So I told myself my paranoia was because of her – two tests said there wasn’t cancer. Why do I think it’s still there?
Late September, coming home for lunch one lovely, sunny autumn noon, I parked the car and as I was getting out of the car, looked up and saw a mirage standing in my garage – you know, like the wavy lines you see on a highway on a hot summer day. But this mirage had the shape of my cousin who had died. I don’t know if she came back to tell me; or if “my” God was telling me; or if my body/mind was telling me – but there was something communicating with me and I knew at that moment I had cancer and I had to do something about it.
In October, during my appointment with the doctor, I told him the lump had to come out – even if the other two tests showed nothing. So the end of October a lumpectomy was done, and cancer was found. In November a mastectomy was performed, followed by chemotherapy and radiation. I remember the “just get me through” mode – through this day, through this treatment, through this cancer.
Cancer and treatment were not pleasant, and at the time I thought there wouldn’t be a detail I would forget. But time has a way of putting the ugly things aside. The five-year cancer-free milestone has passed and through this experience my values, priorities and faith have become clearer.……….but I still get angry every time I hear someone has been diagnosed with cancer.

 

I’m a Breast Cancer Survivor!--Reflections of Lorraine Tressel

March 1996
      Had a second mammogram as requested by Virginia Piper Breast Cancer Center. Dr. Day did not let me leave until she showed me mammogram and area of concern. Before I left, an appointment was set for biopsy. After the biopsy, the surgeon came to me in recovery area and told me I had cancer.
I thought he must be telling to someone else, but he was talking to me.
     After the surgeon left, I covered my head with the blanket and bawled. After a while I knew I had to stop crying and get ready to leave as my dear neighbor, Betty Hagen, was coming to pick me up.
     On the drive home, I told Betty my terrifying news. Later that evening, I called Betty and told her I’d gone into my house and cried and screamed and felt so scared…I’d received a death sentence! She said she’d done the same.
     Betty told me later that her thoughts were, “Oh gosh, I’ve gotta kee` my mind on my driving. And with a big lump in my throat, oh this is a lot especially when it’s a friend.” Later in following months when I’d come over to her house I looked like I couldn’t go any further. In fact, I sometimes thought I couldn’t walk back home.

(Before my cancer, my husband Art, Betty’s husband Murt, and Betty’s sister Jeanie had all died from cancer…so Betty and I had been thru the wars together.)

     It was necessary to go into the hospital again to have tissue surrounding the tumor and lymph nodes removed. The following morning, a doctor on her rounds said what I heard as “more cancer”. She left and I started to cry. The young Bethel student nurse didn’t know what to do and then someone said to get Anita Thompson to come and see me. Anita (forever to be known as Angel) came and I related the news to her. Wise, kind Anita said, “we won’t know for sure until tomorrow, so lets let today be and if it’s more cancer we’ll cry together tomorrow. I calmed down and agreed I could do that and we learned the following day that the nodes and tissue were clear.
     My great friend, Penny, visited me in the hospital and brought cookies. It was good to have her there. The chaplain came then and we held hands and took communion together. Anita Thompson was there the first day of my radiation and many treatment days thereafter. She was there at every one of my chemo treatments. She’s a gift from God and I feel blessed to now have her as a friend.
     During this time, mostly my thoughts were on the cancer situation…continuing to believe that the cancer would kill me. My good pal, Carol Miller, accompanied me to see the surgeon. I understand him to say that my situation was actually not too bad. Carol interpreted his statistics and I believe she thought that my odds were better than I thought. Somewhere along this time of fear, my thinking became, “let’s do what we can…better to go down fighting than to give up.”
     After the surgery recovery, radiation followed…6 weeks of it. I was asked to attend a class explaining things that could occur. I asked several dear friends to attend with me. Penny Kranz and Yvonne Stafford were able to come. Their loving support was needed and I always need extra ears to hear and remember and understand.
     Starting the radiation at the Virginia Piper Cancer Center was frightening…however; great care was taken to identify treatment location and positions. The director, Dr. Day was excellent and kind and professional. A trio of nurses were assigned to me so that I always had two who knew me who handled the actual treatments…again, always kind and respectful.
     After completing radiation, Oncologist Dr. PJ Flynn said I’d need chemotherapy…begin in late June. While visiting in Grand Marais at a cabin on Lake Superior along with my good friend, Yvonne Jensvold, I told her that while combing my hair with the sun behind me, I could see my hair starting to fall out. She asked how I felt about that and I said it just didn’t matter…and it didn’t! My hair looked strange for many months! When chemo was complete in January 1997, Dr. Flynn said, “There can be many side effects from chemo and you had most of them.” I recall the mouth and lip sores as being the most difficult and painful…but it was during this time that I discovered Blizzards and how good they tasted and how smoothly they went down without pain.
     Chemo treatment was difficult! The many side effects along with constant exhaustion! Part of my way of coping was to think of the date when this should be over and I could surely make it that long. And I did!
     I had wonderful, loving support throughout from friends, and neighbors and relatives. The Lafayette relies were helpful and supportive always. The Grand Marais community was amazing: cards, calls, and notes form the McEleveys’ and Schultes’; a wonderful card from the Bookies; a post-card from the church staff telling me that I was in their daily prayer; Pastor Sorenson visiting and praying with me whenever I was up there. I felt that prayers and healing messages and thoughts were always there for me.
     New cancer friends have become an important part of my life along with the many I already had. Reach to Recovery is an American Cancer Society program that I now work with regularly. Renewing Life, a class at Mercy Hospital led by social worker Marcia Carlson along with Chaplain Alan Grant was a great experience! I joined it because it sounded like it would be a help in getting back to a normal life, plus I thought I was well enough to attend the weekly meetings. Later on, I had an opportunity to assist in helping with Renewing Life. I’ve made friends with exceptional people who now are an important part of my life.
     As a result of the Renewing Life class, I now handle the annual daffodil sale (American Cancer Society) at Mercy & Unity Hospitals. There are many fine people who volunteer to help sell daffodils and make it run smoothly. Many friends regularly find or bring vases, which we sell too…to people who’d like to bring the flowers to a patient’s room. Volunteer musicians are now a regular important piece of the daffodil sale. It began with a few musicians playing to simply provide soothing background music.
     The music piece is now an on-going program at Mercy & Unity Hospitals. We call it “Healing Harmonies.” I direct and coordinate it with Marcia Carlson. We have about 75 musicians who all play on a regular basis at both hospitals: flutists, guitarists, harpists, pianists, vocalists, cellists, and violinists. It is a magical healing program of music that the volunteers beautifully provide...and which benefits patients, families, friends, staff. It’s a joy to be part of and provide music to heal the soul.

So I’m still Lorraine Tressel…now with a broadened horizon, a revised attitude, a strong faith, a constant attitude of gratitude, an enlarged family of friends, a life where volunteerism is essential, joy and fun are expected, dear people are often told I love them . . .Life is good.

 

 

Ten years ago my aunt Patty died of colon cancer. She was my dad’s younger sister, one of 11 children in the family. While I was old enough to remember the major events, I remember little about the feelings or conditions of my relatives. Talking to my parents was tough, but very necessary in terms of discovering what they went through. After talking to them, I realized how in the dark I was at the time. Whether they told me and I’d forgotten, or whether they never told me, there were many events and stories that I’d never heard.
My aunt’s experience was similar to Tom’s in that she suffered a lot of pain, but was too strong or reluctant to go to the hospital until the pain became overly unbearable. After missing a softball game due to hospitalization for abdominal pains, the doctors discovered that she had colon cancer. By this time the colon had ruptured and the cancer had spread to the cavity and other organs.
Patty found out about the cancer in May of 1993. She went through a few surgeries and radiation treatment, but by December the doctors told her that the cancer was terminal. She went to a support group with other patients who had been diagnosed with a terminal disease. These meetings were among the few places where she could admit/discuss the fact that she was going to die. She couldn’t talk to the family about her dying – whether it was because she didn’t want to hurt everyone, their lack of belief, or their constant positive outlook on the situation. After a point, I would rather admit to and prepare for my inevitable death than live in a façade. I wonder if this was the case with Patty.
While Patty was in the hospital, the entire family rallied together. The waiting rooms were frequently filled with her grown siblings and their children. I’m sure the doctors felt overwhelmed by the constant questions and suggestions. My entire family was very active in knowing and understanding the condition and what the future would mean.
After the cancer was labeled terminal, Patty moved back to my grandparents’ house to enjoy her last time with family. The cancer took over her organs, including her digestive system. Eventually she was unable to eat anything, and essentially starved to death. She died in mid June of 1994.
My entire family talks about Patty’s spirit throughout the episode. She was a tough but patient person who never wanted to burden anyone. A few of the stories people remember include Patty insisting that she wear her seatbelt in the car, (after learning of her inevitable death) savoring a piece of watermelon, and mentioning that she should have her teeth cleaned (to avoid cavities). There was always a lighthearted humor underlying her disease.
I wish I remembered more about the little stories and events surrounding the actual disease and death. Most of my memories include visiting her in her apartment for the last time, hearing of her death, and the funeral.
I’m very appreciative of this experience to relive or relearn of the situation from a different perspective. It’s somehow comforting.

 

After enduring a period of intense chemotherapy a woman was successfully treated for cancer about seventeen years ago. Her church had been praying for her and then gave thanks for her recovery, which is how she met my friend’s uncle. They started seeing each other while she had cancer and they were married shortly after her remission. Her health had largely improved, except occasional periods of jaundice. Her liver was still reacting to the chemotherapy.
The newly married couple had tried to have children of their own, but after years of trying decided they couldn’t. Her body had gone through too much trauma during the treatment process. They decided to instead adopt a boy from Korea. After the long process of adoption papers and interviews their son arrived. The couple was excited to have a family and three years later they decided to adopt another boy from Korea.
The second son had just arrived when the woman’s health began to decline again. This had been happening over the period of sixteen years since she had finished her chemotherapy. This time was worse than the others. She couldn’t seem to get healthy again. The family knew that there was not much time. After a year of being in and out of the hospital, the woman died of liver complications due to the chemotherapy her body had gone through roughly seventeen years before.
Their oldest son was five years old and the younger son was two. The younger son still hasn’t learned to speak yet because he hadn’t attached to the mother or father. The father had been so busy taking care of the mother and the mother had been so sick that it was difficult to spend enough time with her baby.

 

 

Support for Swing a Club: facing cancer

Sincere thanks are offered to the following agencies and individuals for their financial and in kind support of Swing a Club: facing cancer. Their generous and passionate support has allowed a broader audience to experience the power and poignancy of Swing a Club: facing cancer.

Anonymous Donor
The Ella and Kaare Nygaard Foundation
The W. M. Keck Foundation
St. Olaf College
Bloomington Center for the Arts
The University of Iowa
Scottsdale Community College
The University of Minnesota
Willamette University
The Center for Medical Humanities at the University of Minnesota Academic Health Center
Midwest Instructional Technology Center
Stanford Johnson
Dr. Lisa Tillmann
Peta Torrens / Kawana Waters State High School
Maricopa Colleges Television