Getting a consult and gaining your sanity
During the process of my treatments, my primary doctor suggested a consult be set up with the affiliated doctors at Dana Farber in Boston. This would be to establish a relationship with them in case I needed to head that way.
So following round 3 of my treatment cycle, we took the ride up to Boston where I met with an oncologist and bone marrow specialist. I wasn’t enamored with the idea of piling into the car and spending the day like this, having just come out of the hospital and dealing with the usual heavy, depleted feeling. But it seemed wise to keep these appointments and be sure I had all the tools in my bag in case I needed them.
Dana Farber is an amazing place and three times the size of what we have in RI. But they treat each patient personally and quickly. But what a place!
Let me say that following my meeting, I wanted to hug the oncologist for several reasons. :-) She explained the diagnosis again, confirming what my doctors had told me—this was something I hadn’t had for long. It’s not hereditary, and my current physical condition was very positive and strong. We talked about the disease, it’s attributes, the treatment plan, and the maintenance plan that would follow. A long road, but as my doctor had told me, “this is a marathon”.
What really struck me about our conversation, and changed the way I felt about the process, was when she said, “I want you to know this is not your fault.”
This sounds like a simple statement but it was powerful for me.
I didn’t feel guilt about having done something wrong or not taking care of myself, but your body is so much more than we give it credit and to have a shocking intrusion like this with no known explanation left me feeling that somewhere along the way I’d failed myself.
But I hadn’t.
Her words made me feel so much lighter, more positive, and saner about what was going on. And suddenly all of this was going to be possible. When the bone marrow specialist told me he didn’t expect to see me again and to have a great summer, it was freeing and uplifting. I wasn’t going to be this sick person forever and we were going to get me to the end of the line.
So keep in mind, we can live by healthy guidelines, or not, but at the end of the day, there isn’t much we can do about these circumstances. The key is to be kind to your body and forgive yourself. Pour all the positive food and emotion you can into that space and let it fill up.
**As a postscript and as I look back over my shoulder now, it remains an important action to have taken that I had a consult at Dana Farber. It had been recommended by my own oncologist and in retrospect I realize that if I’d needed the additional expertise or a referral for a bone marrow specialist, this would have already paved the way to arrange for the visits and treatments. Whether you’re the patient or caregiver, creating simplification and preparing for what is needed can make a difference in the process. There is enough complexity and detail going on when faced with these circumstances so the simpler the better. Let your doctor or team of doctors help you by making these arrangements and ensuring you have all the support you need should that arise. Dana Farber felt like I had extra insurance in my pocket if the time came, and I’d seen what the place was about. This helped me mentally to prepare for the road ahead.
