A 79-year-old woman with incurable and rare blood cancer, Multiple Myeloma, shared her medical journey. She has been on weekly chemotherapy for 10 years.
When she was diagnosed, she was sixty-eight years old and was in her own biomedical-related business. Her mom was in hospice care and she was responsible for taking care of her: every month she flew to see her mom. She knew she couldn’t give all the time and attention needed for cancer treatment while taking care of her invalid mother. She also knew she “could not be a reliable consultant for [her] clients.” So she closed her consulting practice, which had “one very big impact.” That part of her life stopped instantly.
“I had been mostly on the phone or traveling all the time and most of the people I interacted with were my professional contacts. Now all of them were gone from my life … All the things I thought I would do in retirement were mostly not going to happen. Also, I was very very frightened by the unknown.”
For her, “Knowledge is power.” She was terrified because she did not understand any of the words. It was her first time hearing about “Multiple Myeloma.”
“When I was typing out questions for doctors, I was actually standing up at my computer. I was too stressed to even sit down. I would be up until one or two in the morning, preparing for that meeting with my doctor.”
“At that time, I was sent to a doctor who never once looked me in the eye and she sat looking at her computer with me in the corner of the room. I really noticed that there is something funny about not having eye contact with a person. It makes you feel that they don’t really see you ...I am not a medical record number. I am a patient and I am over here. I am not inside your computer. [Also] during two or three appointments in a row, I asked her [the way to research] really good information, so that I can educate myself. She never once responded to that...She just ignored that.”
“Some doctors feel that if you ask questions, then you are doubting their knowledge or you are attacking them in some way. But I have two college degrees and have spent my whole life in the biomedical field professionally. I could learn new things and I wanted to."
"I also typed out a little one-page short list of things that I want my oncologists to know about me. I started with things that don’t show up in my medical records that she could not know. One that I live alone. I do have a biomedical background which would help her understand what level she could talk to me that I would be able to understand. Then, I said I am interested in learning as much as I can... I want to be working with a doctor where I feel comfortable asking questions and the doctor feels comfortable about my asking questions, knowing that I am not attacking the doctor. [Despite my efforts], nothing changed at all.”
“[Therefore,] I decided to look for another doctor. This time the doctor sat down close to me, looked me in the eye, and really had a good two-way dialogue. I told him about my end-of-life wishes which I had written out: I had an Advance Directive. I did not want to be kept alive by all kinds of traumatic, invasive procedures when I am in the process of dying.”
“Changing a doctor turned out to be one of the most important things that I have ever done. But since I am not a doctor, I wondered if it made any sense for me to be judging a doctor, let alone making a change in doctors.”
During chemotherapy treatment, for six years, she felt very sick for the whole week, except for 1 or 2 good days. Thus, she mentioned it to her specialist. However, “he did not even seem to hear me.” She explains, “not that he is not a caring doctor. It was not the focus for him. I had to wait until I saw him three or four months later.” As the doctor knows that she is not a complainer, he finally seems to hear her when she reports the extent of her side effects.”
“I knew that he did not intentionally do anything to make me feel bad. He was trying to keep me alive. So I didn’t want to sound like I was complaining to him.
When I finally got his attention, he talked about what we could do. We tried having me take only one drug for only three weeks while taking the other two drugs every week. Then, we looked carefully at the lab-test results and if the cancer was not getting worse, we decided to continue on that schedule which was less chemotherapy with one drug. That worked very very well but then half a year later, I was again feeling very sick. Once again when I got his attention, he said, “Well we can try having you take that drug only every other week instead of three weeks out of the month.” And I was a lot better.”
“So in that respect, they care about the quality of life. But the patient must bring it up. It is not the top thing that doctors are thinking about. And no doctor ever asked me whether I am frightened, anxious, or depressed. Never. Never.”
Q. Do you want doctors to ask patients about their feelings?
“They are very considerate and professional but that’s not their job. They have so many patients they have to see every day that they are scheduled 15 or 20 minutes for each patient. They are really busy looking at their computer and lab-test results.”
“If they had time, it would help. However, I think it’s up to patients to tell doctors that I am really having a hard time emotionally.”
“I am not a complainer. So if doctors do not ask, I don’t tell the doctors. I [also] noticed that some patients who have the same cancer that I have to get their treatments in a large hospital where there are social workers or oncology therapists. Once in a while, I heard that people have access to that kind of help.”
Joining a cancer support group emotionally helped her.
“In that cancer support group, everyone had all different kinds of cancer. They were suffering terribly or they had just got married and then been diagnosed a month later with cancer that was going to kill them… My heart just went out to these people and I found myself so motivated to go there every weekend and hear how they were doing and support them anyway I could... and that’s where I went with my emotional needs. umm. one man came in one time and said “I am afraid of dying. I haven’t thought about it before.” So he opened that subject out for discussion and… Another woman said she was dying unquestionably and her husband was not supportive….and one man said, “I am so afraid for my wife to know how bad the side effects are. She’s already suffering in so many ways I don’t want to be a burden for her. I am so grateful to be able to come here where I can [freely share] what I am afraid of [and] what I am suffering from." We could all just sympathize. So that was a very good way for me to handle those needs.”
Fortunately, she also has an “absolutely WONDERFUL primary care doctor who has been my doctor for almost 40 years… She cares about the whole person, not just symptoms. And when she asks questions she very much gets into the emotional side of things, not just physical. So she cares for her whole patient, body, mind, and spirit. We tell each other about good books we have read. I take her gardenias or oranges from my garden depending on the season… I used to always send her postcards from my trips, thanking her for taking such good care of me. She has seen me through all the big ups and downs of my professional career and personal life. To me, she is the ideal doctor.”
Comments