The only thing that makes me more uncomfortable than dealing with Cancer is writing about dealing with Cancer. However, I promised myself that I wouldn’t have a blog that blinked. I’ve put this subject off for two months now, and I have a lot to say. So for the next four weeks, I’ll write about some of the experiences our family has had while navigating this foreign landscape.
I’ve taken to calling my life partner Super Husband on this blog, and I am not being ironic. He’s the most supportive, loving, respectful, trustworthy, and helpful person I’ve ever met. So when he was diagnosed with Prostate Cancer eighteen months ago, I was blown back. This moment changed my perspective about work, happiness, security, and faith. It changed the way I spend my time, the way I think, and my role in the relationship. And when you are a caregiver to a person who is sick, one of the first things you begin to learn about is the Ists, the medical specialists who become an important part of the patient’s life. And life in Ist-ville can be a bumpy experience for first timers like my husband and me.
The Urologists came first. The original Urologist did a prostate biopsy, which resulted in septic infection and a four day hospital stay. A second Urologist signed SH’s release from that stay and informed him of his cancer diagnosis. A third Urologist performed a radical prostatectomy with a robotic device.
Deep Vein Thrombosis, or a blood clot, brought us into contact with the Hematologist. We met this doctor for the first time during the third visit to a third hospital in three months.
The Oncologist and the Radiation Therapist are our newest Ists. Nine months after the surgery, when the PSA (Prostate Specific Antigen) level started to rise, we decided to seek these two out for some advice on how to proceed. So we’ve met, taken advice from, gotten treatment from, and listened to the opinions of six different medical specialists in the last eighteen months.
It’s easy to see how this could get to be a problem. Except for the cancer, which hasn’t made him feel bad, my husband is in good health. He’s relatively young. And even though he has had two major, life-threatening complications, things could be worse.
How would it feel to keep all of these doctors and their advice straight if I were 84 instead of 54? What if one of us had dementia? Poor hearing? What if there were other complications like diabetes? The speed with which the Ists could accumulate would be mind boggling. Even if each specialist gives you the exact same opinion and advice about how to proceed with your medical case – and they don’t- it’s difficult just to put names and faces together.
For the most part, our Ists are calm and professional. They have patiently answered our questions and indulged our attempts to learn more about the disease and treatments. But there have been times, especially when we were in the hospital, that I could see the Ist looking toward the door with longing, just wanting to tell us what happens next and get out of the room as fast as possible. These are the times when I have to channel the Dog Whisperer and summon my calm, assertive energy. As my daughter stated in a recent conversation, “You just have to keep them there as long as you can and get as many answers as you can.”
One of the things I have learned from living amidst the Ists is to pay close attention to conversations with doctors. After the visit, I always make an effort to ask Super H what he heard. I write things down. I take pictures of the board that has the nurse’s name and the date. Communication is very important because emotions are high, and expectations for the visit may be different for everyone involved. Clarity can save time and enable good decisions about treatment.
Another thing I didn’t do at the beginning of this journey that I do now is to stay. If SH is in the doctor’s office or hospital, I don’t leave until he has seen all of his Ists. This isn’t easy because sometimes Docs show up in the hospital after the normal day has ended. Patients are in the hospital because they are sick, and the things they hear while lying in a bed may not be remembered after a long, drug induced sleep. At 8 p.m., I feel like dropping the strong façade, but I don’t. I can’t. I won’t. This temporary discomfort is paid back in full when my husband and I are able to make calm, rational judgments about his care.
I have no wish to bash doctors, and can empathize with the growing pressures they face in modern medical practices. Sandeep Jauhar explicates some of these dilemmas in Doctored: The Disillusionment of an American Physician. Here’s a link to an excellent review of that book. http://www.npr.org/blogs/health/2014/08/19/341632184/cardiologist-speaks-from-the-heart-about-americas-medical-system
The medical profession is taking steps to address the Ist lists. At least one of the hospitals we visited in the summer of 2013 assigned a patient advocate who oversaw the whole case. I’ll write more about this particular hospital in the coming weeks, because one of the enduring take aways from this whole experience is the good in the world. All along this journey, we’ve been treated with kindness, patience, and care that we may not have even known we needed. My Super Husband has his first radiation treatment today. We live in hope that his Cancer will be eradicated, and we are grateful for the Ists that have made a cure from this disease possible.