This story is about my wife, Ingrid, who -- after 5 years of colon cancer -- passed away on December 17, 1998. As a caregiver, much of what you do depends on the relationship between the two people, their individual strengths and their spirits. Ingrid was an unusually positive person. In over 35 years of marriage I did not once encounter her in a bad mood. Her constant warm smile was infectious, and at the bottom of her deep blue eyes lay an ocean of serenity.
Based on our eating and cooking habits, and according to general wisdom, Ingrid would have been one of the least likely candidates to develop colon cancer. There were plenty of fruits, vegetables, and daily supplements in our diet. She was in great shape and very active. The discovery of her cancer was preceded by a long period of severe emotional stress on the job. Later, I also discovered that there had been a history of colon cancer with her paternal grandfather.
Up front, my strong advice to anyone is: Do not accept a lone medical opinion -- ever.
Her Initial Diagnosis
In January of 1993, Ingrid had some blood in her stool and had a proctoscopy done by her GP (general practitioner). Since there was nothing detected, she was advised to continue to watch the situation. In early April, she had a severe gall bladder attack and needed her gall bladder removed. At that time, they found that she was anemic, and during the operation, the surgeon noted an abnormality of the colon. He recommended a colonoscopy as soon as she recovered from the surgery. The colonoscopy revealed a lesion, and Ingrid was scheduled within the week to have her colon resected. The cancer, or adenocarcinoma, had invaded through the entire bowel wall and into fat tissue with 14 of 15 lymph nodes showing metastatic cancer. The cancer had developed at an unusual site, close to the cecum (where the large intestine starts) and was classified as Stage III.
To illustrate her strong constitution and spirit, I would like to mention that on the second day after the gall bladder operation she planted flowers. Five days after her colon resection she took a private plane to Upstate New York for our daughter's college graduation. She was in extreme discomfort, but she did not want to miss this event for anything.
Her Second Bout
She lived a very active, healthy life for about 3 years when, in February 1997, she felt pain and pressure in her lower abdomen. CT scans revealed a growth near her ovaries. She had another surgery, and a tumor the size of two large grapefruits was removed from her ovary. The cancer was classified as a primary endometroid adenocarcinoma of the ovary. In our consultation with Ingrid's oncologist, I questioned the diagnosis, asking if it was not a metastatic colon cancer, since this would be important in deciding which chemotherapy to prescribe. The pathology department reconfirmed the original diagnosis of primary ovarian cancer. Ingrid received six months of cisplatin and taxol -- the standard regimen for ovarian cancer. It is a very debilitating chemotherapy, and Ingrid was in bed for six days after each treatment with nausea and vomiting. She also developed a very severe and painful case of neuropathy caused by the chemotherapy. The cancer marker CA125, which is used to measure disease progression in ovarian cancer, came down within normal limits by the time she was finished with treatments.
Thereafter, we scheduled a visit for a second opinion with a gynecological oncologist and learned, to our great dismay, that the ovarian cancer diagnosis was wrong and that it had been a metastatic adenocarcinoma, classified as a Krukenberg metastasis, originating from the colon cancer.
In January 1998, further metastases were discovered in the liver and the spine, and she had a vertebrae with a compression fracture. Her spinal lesion was treated and stabilized with radiation therapy, and now knowing her true diagnosis, she was started on CPT-11. Grasping for straws, I traveled to Germany to obtain the monoclonal agent "Panorex" which was being administered there on a compassionate use basis. The CPT-11 did not have any positive effect, so the chemo was changed to 5FU. By late August 1998, her CA125 (which, we learned, can also be used as an indicator for colon cancer activity) had regressed to 10 -- a normal level.
We decided to vacation in Ingrid's hometown in Germany in early October, 1998. While there, she developed severe back pain and what appeared to be an edema in her belly. In fact, I suspect it was the development of carcinomatitis throughout her abdomen. She was bed-bound in the hotel for most of the time. Soon after a local physician had stabilized her sufficiently for us to go home, Ingrid was admitted to our hospital, where she stayed for three weeks. Her condition and blood values deteriorated seriously, and the swelling of her belly and the edema, now also in her legs, continued to increase painfully.
Ingrid wanted to come home for Thanksgiving. Her oncologist spoke with me privately and advised me that "no one" with her blood values would ever leave the hospital again. He shook his head, saying, "She is an extraordinary woman with extreme willpower. It is not any medicine that keeps her alive, only her strong will." To show her strong will and desire for independence, I need only mention that in the final year, with metastatic colon cancer, she handled 125 of 130 medical visits herself (all types of doctor visits, MRIs, tests, radiation, root canal, etc.) She never allowed me to come along, not wanting to give up her independence. She would always admonish me if I used the word "sick" or any expression related to that word. She would say, "Remember I am NOT sick."
She wanted to be home, where I nursed her to the end. She died at home with me in the early morning hours of December 17, 1998.
How did the family deal with it?
After her second surgery, the research roles were switched. Ingrid told me that she was not capable of concentrating on reading anymore, even though she had been an avid reader all of her life. I took over, unconditionally, starting to become very active on the ACOR Ovarian Cancer list and later on the ACOR Colon Cancer Discussion List. There wasn't a day when I did not devote at least one or two hours to exchanging experiences and doing research, challenging doctors and their findings, and reviewing options with Ingrid. I became my wife's "advocate" in every respect of her health and well being. There were stacks of medical forms, insurance rejections and financial issues that I kept away from her. I felt that she had enough to deal with and needed not be concerned with one scrap of medical paperwork.
Her greatest family support was frequently having one of the grandchildren come to stay for the weekend. My son either stuck his head in the sand or was too busy with his contracting business. He seldom visited or called, even though I admonished him to see his mother more often. It did not help, even in her end-stage he did not manage to see her more than once every seven to ten days. We only live a mile apart. I do not blame him, as Ingrid taught me not to. Maybe he could not face seeing his mother so ill. But it hurt me for her. Our daughter, who lived about 300 miles away, stayed in daily touch by phone. She flew down to see us about once a month, and their mother-daughter bond grew stronger as Ingrid's days on this earth dwindled.
I asked Ingrid if she wanted to join a support group. She did not feel it was the right option for her. She wanted nothing to do with "being around sick people" and being dragged down by others' as yet unknown situations. "You are my support group and that is all I need," she would say. But I needed support to stay strong myself. I received the strongest support from all the people out there on the ACOR Colon Cancer Discussion List. There was always someone there who would know, firsthand, about any particular abgle.
Honestly, we were each other's strongest supporters. She was the greatest Love in my life. There wasn't anything I would not do for her, working myself to exhaustion day and night, being her nurse, lying next to her every night, until that final night. With all her suffering, she never complained, always asking about others and how they were doing.
My advice for other caregivers
No matter how trying things may be, we need to remember that we are the healthy ones. I would like to illustrate this with a small story. Having five or six sleep interruptions every night for almost a year, running my own consulting business from the house, having to take international trips, earning the money to support this thing called life, I got run down -- sometimes getting irritated without meaning to be that way. One morning, during breakfast, Ingrid asked me to do a small repair. I gave an irritated reply, to which she responded very kindly, "Honey, just put yourself for five minutes into this body of mine, and you won't feel that way anymore." I felt so ashamed. Not knowing my limits, I had run myself down and would advise all caregivers: "Know when you need to take a break and transfer responsibility to someone else, be it for an hour or a day. You need to take a break yourself!"
Another piece of advice: as you know from Ingrid's story by now, get a second opinion on everything. I asked the right questions and got the wrong answers; a second opinion might have provided the right answers.
In retrospect, I would also call in Hospice. Ingrid was visited every evening by a nurse, who took her vital signs and blood samples, hooked up the daily IV, etc. I now know that Hospice would have provided more pain medication. But Ingrid was such an eternal optimist -- and so was I. We believed we were going to prove to the world that there were still miracles to be performed. A week before her death she said to a friend, "Don't think for one moment that I am giving up." I always feared that I would damage that optimism -- essentially "sentence her" -- if I called in Hospice. Knowing what I know now, I would handle this aspect differently.
Ingrid very clearly expressed her desires about what should happen if she passed on before me. She wanted to be cremated within a day, with no funeral and no wake, but rather, an uplifting memorial service at our church. She wanted her ashes to be scattered near our favorite summer walking place -- a jetty by the ocean. I only once asked her to consider that maybe I would like a place to go visit her. Her answer was simple: "Bury me in your heart and you can visit me anywhere you are in this world". I followed her wishes and am glad I did.
How am I doing?
How can I convey the pain and the grief of losing my Love of 35 years? It is a hard road that I must travel; I must get up every day and do something. I stay in touch with friends and family. My daughter has been my greatest supporter, my best friend, and the "wind beneath my wings." A friend gave me a book titled "How to Survive the Loss of a Love" from which I read every morning over breakfast. It has helped me to understand that I am not alone with this, nature takes time, but it will help me heal if I allow it. A cousin asked me to go skiing with him in the Dolomites, saying that I have to get away, that I need to be alone with a friend. What a great turn around that proved to be.
Most of all, my faith in God helped me through this. It has grown stronger with the ensuing time. If I didn't know it before, I know it clearly now -- shifting your focus from yourself to loving and helping others brings new joys to life. I KNOW that I will meet Ingrid again. I had three distinct messages from her within the first seven weeks of her passing.
I would like to finish with the poem Ingrid selected for her prayer card:
Nor speak of me
and talk of me
as though I were
I loved you so...
here with you.