“At Least, Not At This Time…”
At that last Zoom meeting with Dr. Malakoti, I complained that in all these months of tests and speculation I haven’t yet had a physical examination. I guess I got through to her because the scheduler at Fred Hutch called me the next day and made an appointment for just that, before we would decide on another lymph node biopsy. That made wonderful sense to me, and all of a sudden I felt more secure, like we weren’t just throwing darts in the air. An exam would tell Dr. Malakoti a great deal about the state of my health. And it also taught me the value of advocating for myself.
So Gene and I drove down to Fred Hutch for a noon appointment and anxiously waited to see my doctor. She felt around my body for swollen lymph nodes and measured the ones she felt in my groin on both sides.
Dr. Malakoti confirmed, “Yes, we will need to get you into surgery for this biopsy as soon as possible.”
“How soon?” I asked.
“Probably within twenty-four to forty-eight hours,” she assured me.
I waited, not too patiently, for a call from the scheduler. Nothing. I called them twice a day. Nothing. A week of waiting. Nothing.
So I decided to go down to Seattle because my son needed me to babysit for his kids. His anniversary trip to Belize with his wife was more important to me than waiting for a phone call that wasn’t coming. Life goes on, doesn’t it?
Dr. Malakoti did take the time to message me about the surgeons’ decision to biopsy the right node instead of the left. And she emphasized that they haven’t found any cancer in my tests “at least, not at this time.”
Those are ominous words. What do you mean, “not at this time…?” Well, I’ve made it to age 76 without any cancer or its symptoms. Now I have symptoms. Now they are subjecting me to invasive tests. Now they tell me, “You don’t have cancer at this time.” So what does that mean? That cancer is a slow-moving train that may or may not collide with me someday? Everyone in the world can say that, can’t they? From the day they are born. How am I any different from other people? I have some hallmark symptoms of blood cancer. So they are treating me seriously.
I guess, since no one in the medical community will talk straight with me, I will have to wait for a definitive sighting of lymphoma, or lack of it, in my second biopsy.
I asked Dr. Malakoti directly when she examined me: “What are you looking for? What do you suspect? Could I have lymphoma?”
She moved around the room to get something, but did not answer my question. Maybe any form of speculation is strictly forbidden at this point. Maybe they will level with me when they have an answer.
So I return to patience and acceptance of what I cannot change.
Your stories are very captivating, Marilea! I too feel that the amount of self advocacy required as we age is compounded annually, and I fear that this situation will get worse before it gets better. Even with the best insurance coverage and all the adders, I’m constantly amazed at the phone calls I have to initiate for results! Thanks for your stories.