|The initial perspective comes from the often forgotten point of view -- that of the spouse. Prostate Cancer will be diagnosed in over 190,000 men this year and will kill in excess of 33,000; but the toll is far greater because each of those men have a significant other who shared many, and more, of the fears and concerns brought by that diagnosis. Diane Johnson is one of those people; let's get to know her and her husband, Jim Monahan.
VS: Diane, please tell us about how your life with Jim started.
DC: We first met in 1981 after we had both just moved back to our hometown. One night I happened to be at a neighborhood pub. He was expounding to his friend about the brilliance of Alexander Haig. I couldn't let that go by, so I said something to my friends about the IQ of someone with that kind of opinion. He laughed and invited me to have lunch with him the next day. That was the beginning of 18 years full of animated conversation and love.
VS: After that auspicious beginning, you began to share a life. How did Jim handle the normal medical issues that arise in a family situation and become aware of the need to screen for prostate cancer?
DC: I used to compare Jim to Woody Allen--'that earache must be a brain tumor' mentality. But, in reality, he rarely went to the doctor. We had just moved back to Seattle and I was nagging him to go to a local doctor for a routine check-up. Women are programmed to do that from adolescence on. Prostate cancer wasn't even on our radar screen.
VS: How did you two discover that he had prostate cancer and what did you do from there?
DC: Jim had scheduled a routine physical. The urologist felt something during the DRE, but the PSA was normal. Jim insisted on a biopsy, even though the doctor insisted it wasn't necessary. The biopsy was positive.
VS: How hard was it to get the doctor to do the biopsy when he thought it wasn't necessary? ..and what made him insist on having it done?
DC: As I mentioned above, Jim was sort of an anxious personality. There was no way he could wait and see what would happen once the doctor indicated there could be a problem. The doctor understood his feelings so he ordered it, but he made it abundantly clear that he couldn't
imagine that it would be anything serious. At the same time, during the biopsy, we overheard him say to the nurse, "It doesn't take a rocket scientist to figure out what's
wrong." We knew then that something was very wrong.
VS: What happened next?
DC: Everyone we consulted recommended surgery, during which they found malignant lymph nodes. They aborted the surgery and sewed him back up. Jim was 43 years old.
The urologist told us that Jim had at best two years to live, so he should get his priorities in order. He had stopped the surgery because he didn't want Jim to have to deal with incontinence and/or impotence on top of everything else. We were about three months into the process and still in shock. Now we were being told there was no hope at all. Of course, we refused to accept that and began an extensive search for help. In these situations, you always fear the worst, but hope for the best.
We combed the Internet and talked to everyone we could find. Jim began hormones and radiation therapy and studied nutrition and supplements. We joined groups (prostate cancer, nutrition), took classes, attended a conference, and read lots of books. At some point I decided we needed two things: a specialist and a focus.
As for the focus, I took the approach that this cancer was an illness that could be lived with and managed like heart disease or diabetes. With that in mind, we put together our team of doctors: the specialist, a family practice doctor, a nutritionist, and the radiation oncologist. I introduced them to each other and they worked together with me as the coordinator. Some of them are still working together. The last link was a hospice pharmacist I was referred to after the cancer had spread to Jim's spine. She spent a lot of time on the phone with me adjusting pain medications and made it possible for Jim to stay at home the entire time.
VS: What other therapies did you try during this time to help extend Jim's life?
DC: In 1996 and 1997 most other therapies were still considered experimental, like chemotherapy. Others, like radioactive seed implants, weren't an option since the cancer had already spread into the lymph system. MRI and CT scans couldn't tell us whether it had spread outside of the pelvic area, but the urologist assumed it had. His PSA didn't start climbing until well into the process, so it was an atypical prostate cancer. We met with Dr. Gerald Murphy to consider participating in his vaccine study. Ultimately, although we considered everything we could find out about, Jim decided to stick with the hormones, which worked for a while, and radiation as needed. He opted for quality of life rather than subject himself to tests and regimens that were not proven. I may have disagreed with him at some point, but it was his decision. Looking back, it was absolutely the right thing to do. Our last months together were spent focusing on family and things we loved to do. It is such a personal decision, different in every single case.
VS: One thing that you've told me that you want to do is to become more of an advocate for patients; tell us a bit about this.
DC: It's been over four years since Jim died and I just now feel ready to participate. I want to help make information available, offer support, and, if it comes to that, advocate adequate pain management. It's shocking how many people still suffer when there are so many pain control options now. I want to be a small part of helping to guarantee that my stepson, James, never has to experience this himself.
Editor's Note: Diane has volunteered as a Staff Writer for The Prostate Net and you will see her first article for us shortly here on the site.
VS: Ultimately the fight that you and Jim waged against the disease was lost. What were some of the things that went through your mind then and what are you doing now to cope with losing this great love of your life?
DC: The urologist was almost right: Jim lived for two and a half years after the diagnosis. He died at home with his son and me. I felt like I had failed him because I couldn't find the answer that would save him. At the same time, I knew we had done all we could. Jim was the only one who could decide how many treatments to try, how many tests to have, which trials to participate in. I only regret that, in addition to coping with this soul-shattering diagnosis, the first thing he had to hear was that there was no hope. Jim was an amazing man---bright, funny, affectionate, and musical. He wasn't perfect, but he was perfect for me. Everyone grieves in their own way and at first I needed to be alone a lot.
VS: One thing that many family members have told me, and I know from my own experience, is that at some point the patient shuts them out of the process. Did you ever sense this aloneness before Jim's death?
DC: Absolutely. He gradually pushed people away until he would only let his son and me be with him. I tried to explain to them that he was not only conserving his strength, but he was also trying to spare them the pain and upset of seeing him ill. He even died during one of the few times I left the room for about ten minutes. That was very frustrating, but I just tried to respect what he needed and realize he was acting out of love, even if I didn't entirely understand. It has got to be all about the person who is sick--their feelings and needs are paramount. Family members don't always get that.The entire process of dying is horrible and wonderful at the same time.It is, of course, as natural as being born, even when it's premature.I was so glad he could stay at home for that process.
VS: If there were any message that you wanted to leave with the viewers, Diane, what would it be?
DC: Talk to everyone, read everything, then step back and make a plan. Build your own team of doctors and specialists, if one isn't provided. Write down and insist on asking all of your questions. Don't let them rush you. Don't be afraid to fire your doctor--however well intentioned, bedside manner does count. You are fighting for your life and you can't afford negativity, passiveness or arrogance. Trust your judgment. You are the customer and you deserve excellent customer service.
Lastly, information is like gold, but hope is everything. No one has the right to take that away from you.
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