The Weight of the Wait

There have been numerous experiences in my life that have been based upon waiting. Some of these have faded into emotionless spaces and others bring strong, overpowering feelings.

For example, I don’t remember the days and hours I had to wait until my four younger siblings were born over sixty years ago. But I can visualize the endless moments I had to wait until I proclaimed, “I do!” in front of my family, friends and husband-to-be.

More recently are the anxiety provoking days of waiting for biopsy pathology reports. In the end, the waiting resulted in the answers to the signs and symptoms in my breast, thigh, and abdomen/pelvis during the past five years.

Waiting has progressed to the administration of chemotherapy drugs and the ever-frequent blood sampling from my finger. Upon the dutiful waiting period of seconds, I would be informed if my white and red blood counts were within range to receive the day’s chemotherapy drug infusion.

Less frequently, but equally important, blood was drawn from my arm to determine how my body was responding to the cancer killing drugs directed to the disease in my abdominal/pelvic region. For over a year, the cancer antigen 125 blood test (CA-125) guided the treatment team, my supporters, and myself. We have been distressed as the CA-125 results increased and overjoyed as the CA-125 numbers decreased. Since my last CA-125 test was last week and the results were fantastic, meaning the numbers were reduced by 2/3 of the previous test, I am out of the immediate wait-zone.

The plan now is to let the chemo do its job and retest the CA-125 in about a month. At that time a CT scan will be ordered, scheduled, and completed. And, depending on the day of the week I have the CT scan on my torso and upper leg, I will have to wait through the weekend for the results, or I will get the results on the following day.

Most recently, a magnetic resonance image (MRI) study was ordered by my newest specialist, the sarcoma oncologist. The pain in my thigh, once the site of a malignant, soft tissue tumor (sarcoma), needed to be investigated. The MRI was done on Monday and I would not get the results until my Friday appointment with the sarcoma oncologist. This delay was because the Tumor Board was scheduled to review my case on Thursday, and a pathologist was going to review my biopsy slides during the week.

On Wednesday, two days after the MRI, the doctor who has been treating my leg for the lymphedema swelling, called me. With the MRI study in her hand, she informed me that, “…there was something peculiar…” in the report and I was not to return to her until I was given a clearance from the MRI ordering doctor. End of conversation. That meant two days of concerned, frightened, emotionally heightened waiting.

Thursday, four days after the MRI, I was speaking to my oncologist of five years who is treating me for breast and abdominal (peritoneal) cancers. He too received the MRI results and said, “It looked good.”

Right! He said, “It looked good,” but when he realized I had not yet spoken with the doctor who ordered the MRI, no details were discussed. That is the responsibility of the ordering doctor, I’ve learned.

The emotional swing from fear, rejection, comfort, and fear continued until the Friday appointment with the doctor who ordered the MRI, the sarcoma specialist.

The results, in brief: 1) Sarcoma soft tissue tumor has not returned, 2) Age-related degeneration is in the lower spine, 3) Evidence of old knee injury, 4) Swelling behind the knee, and 5) A 1.6 cm spot (“area of increased signal”) in the area of the hip ball-and-socket joint.

A biopsy for the spot was discussed, but in as much as I will be having a CT scan in about a month to monitor the progress of the chemotherapy, the same CT scan should now include the monitoring of the 1.6 cm spot.

Furthermore, if that spot is cancer that spread from the abdominal area (metastasized), it too, is being treated with the current chemotherapy drug, Doxil®.

As I look to the immediate future, depending on the results of the next two finger-stick blood tests, the next administration of Doxil® will be in less than two weeks.

We will have to wait as the chemotherapy drug works throughout my body.

We will wait until the results of the next blood tests and CT scan are known.

Wait is a power-driven word.

September 5, 2009

Santa Monica, California