It’s 3:13 a.m. I just woke up in a sweat. This is the fourth night I have done so. Last week (before diagnosis), the physician’s assistant asked for a rundown of my symptoms and one of her concerns was whether I was having “night sweats”. I had just started waking up in the morning with damp hair at my neck (about 3 days) and told her that I didn’t think that would qualify as a night sweat. Well, fast forward to now and this week I have woken up sweating a little more each day.
What does this mean? How much sicker am I getting every day? This is SCARY.
Let me think of something else right now:
The sky was blue, the sun hot, on my shoulders. The street was deserted, a soft breeze rustling the palms, a lone bird calling.
I padded along in my flip flops until I reached the gate, lifted the latch and pushed it open to the familiar creak. The pool stretched before me. Tropical greens and bougainvillea ringed the space, hot pink petals fluttering, scattering.
I chose a chaise, laid out my towel, kicked off my flip flops and lowered myself into the cool blue, submerging and reappearing, eyes squinting in the sun. I swam forward and submerged again, swimming under, gliding through.
I got out, dried off, and lay back until the heat coaxed a return and I found myself floating, looking up at the sky in simple wonder.
Then, I got out, collected my things, and padded back, unaware that I would never return, that this had been my last time, which it was.
I’m going to try to go back to sleep now.
It’s now 11:30 a.m. I have spent the morning on the phone coordinating doctor appointments. I am exhausted. I changed my MRI to a different location because it had been scheduled in a hospital and you have to walk through the emergency room to get to it depending on the time of your appointment. I can’t risk getting COVID – can’t go into a hospital.
I read an article this morning that cancer screenings are down and people are not going into hospitals to get their symptoms checked out because they’re afraid of getting COVID. So their cancers are advancing. I’m not alone.
I was 108 pounds again this morning. It said 107 when I first stepped on it but the second and third time it said 108. Very disappointing. I’m going to try to eat more today. For most of my life I’ve tried to be or stay slim and now all I want to do is gain. What a privilege that would be. You need padding. You must have padding. It’s like money in the bank. Energy stores. Screw sleek and slim. If things go badly, you need a literal cushion.
Talk to you a little later …
I am very upset. My primary care doctor told me to set an appointment with the cancer center. He told me I need a medical oncologist, a surgical oncologist, and a radiation oncologist. He said that I have a large mass attached to my colon and my lymph nodes (“distant”) are enlarged. He said they believe I have cancer and that it has metastasized. He said I needed a CT scan of my chest to find out if it has spread to my lungs. He conveyed the news in a dire tone, saying “I’m so sorry, I’m so sorry.” Death’s door, right? It has been days of hell and tears.
So today I called the cancer center as instructed and just got a call back. They won’t set an appointment with me until all my imaging is done and I have a biopsy so they can “confirm” I have cancer and so that I see the “right kind” of doctor. I asked her what kind of doctor I would see other than a medical oncologist. She just said “the right kind”. What? Not an oncologist?
The way that information was communicated to me imparted a false hope that I don’t have cancer. In my situation, you cling to hope but I have no interest in false hope. You know what you say to the patient? You say, “We don’t set appointments until the oncologist has all of your test results so he can answer your questions and explain the appropriate treatment plan.” That’s what you say.
If they don’t know that it’s cancer, my primary care physician should have said neutrally that they have to complete all the tests but it may be cancer and, if that is the case, they will partner with me and develop an appropriate treatment plan. But they do know.
I told the scheduling coordinator that they should get the biopsy results right after the procedure and asked if I could set an appointment now for a date right after the biopsy (2 weeks from now) so that more time is not wasted. Answer: No. They have to confirm I have cancer. OMG.
I don’t get upset easily. In fact, my nature is too forgiving. It’s a big fault of mine and gets me in trouble. But I’m upset about this.