If I make a wrong turn while hiking, I backtrack until I find my way again. I’ve decided that it’s OK to do the same thing when it comes to finding a cancer care team.
I've always been a person who liked to move forward, even when the path was difficult. As an avid hiker, I'd rarely waste time researching trails, even though trail guides provided a lot of information regarding difficulty levels. If I'd given a little time to studying those maps, I could've saved myself a lot of trouble. Sometimes a trail ended up being more strenuous than I expected and my aging knees balked. Other times, I'd find myself on a very unfamiliar trail, only to have to back track when I got off course.
Nowadays, many hikers use portable GPS devices to pinpoint their location, but I can barely follow Google Maps, and heaven forbid if I find myself in a dead zone, I can get lost really fast.
Navigating isn't my strong suit, but since I like to hike, I must. Even though I don't use a GPS, I do try to be cautious and protect myself from injury. I wear sturdy shoes. I take along extra water, rain gear and a few snacks. I also notify family where I'm headed.
Serious hikers, like my cross-trekking friend, Marie, use pacer poles. On a recent trip to Israel, she introduced me to them. Though we weren't hiking through the mountains the entire trip, we were hiking over rough and uneven terrain. Even in the city, traveling over 1,000-year-old bedrock, the stability those adjustable metal poles provided was so helpful. I felt safer and more secure using them to maintain balance.
Thinking about those poles today made me realize how much I wish I had pacer poles for navigating cancer.
When I was first diagnosed, I didn't know where to turn. We'd just moved to a new city and were barely established. I hadn't even had time to unpack all the boxes before my calendar began to fill with medical appointments. I used the internet to find an OB/GYN. That doctor led me on the most treacherous path I'd ever taken. From her office, I was referred to a breast specialist and then, to an oncologist.
As time went on, though I received good care with those doctors, I felt I needed more. When a new cancer treatment center was built 10 miles from our home, I decided to check them out. It was a new concept in cancer care. They provided everything in one location: imaging, chemotherapy, radiation, infusion, also a gym, library, massage, chiropractic, acupuncture, nutrition and even a chapel.
Ditching the other doctors, I applied for health care with the new treatment facility and was happy to be accepted. At that time, only a certain percentage of city residents were accepted due to the center's policies. They were a regional facility and one of five locations spread across the United States. It was important they keep some spots open for out of state residents, too.
The cancer center was wonderful, and I loved receiving integrative care there, but when my oncologist, Dr. H, left, I felt abandoned. Of course, I was assigned another doctor shortly thereafter, Dr. M, but he didn't know me or my history. I felt uncomfortable and decided to go back to the original team. They asked for records from the treatment center and scheduled an appointment for me to become re-established as a patient with their practice.
When I went in for that appointment, I felt like a fish out of water. Though everyone was nice, nothing was the same. Dr. F, my first oncologist, had moved on and once again, I was assigned another doctor, Dr. P. At my scheduled appointment, I saw a nurse practitioner for about 20 minutes and Dr. P for five. It didn't feel right, and I didn't like it.
Six months have passed since that visit, and I've been ruminating. I really liked the care I received at the cancer treatment center. They focused on all of me, not just my physical well-being. The integrative health care approach was appealing, and I'd missed it, so I called the center and asked how to restart treatment there.
The scheduler hesitated when I explained my situation. She'd never had anyone leave and request to come back months later. She was cordial and promised to pass my information on to the patient care team. She gathered pertinent information and after we finished our conversation, I felt flustered. I wondered if I was being unreasonable wanting to back track my cancer care or if it my right to do so?
If I'd been hiking and missed a turn off, I'd have backtracked as soon as I realized I'd gotten off course. What was the big deal about doing the same with cancer care? Didn't I deserve to have the very best care available? Certainly, anyone would understand my plight, right? But I wondered if they might think I had a few screws loose.
Now, I wait for the phone to ring. I'm hoping the cancer treatment center will re-enlist me as a patient. If they want me to grovel, I'll do it. It feels a little like I'm a spoiled rotten kid. I want things my way and I want them now!
But that's not exactly the way it is — all I want is a doctor who spends time getting familiar with my case and doing whatever necessary to insure I enjoy a long, healthy future. I'd like to remain with the same physician for a very long time and have a good doctor-patient relationship. The doctor, in essence my human pacer poles, would help me stay on path with surefootedness.
Navigating cancer care isn't always easy. At times it doesn't seem to make sense at all. When the path meanders into uncharted territory, patients can easily feel unsteady. But it's OK to go back a few steps if necessary and start over again when you must.
I may end up being the poster child for indecisiveness, but at least I'll be confident in my health care team's abilities. Being able to choose what's best for me matters, no matter what others think.
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