Hello again from the bone marrow transplantation inpatient unit at Moffitt Cancer Center in Tampa.

I learned yesterday that I will be discharged today and move to outpatient housing. This is exciting news! I still have a long way to go, but with luck the worst is behind me.

I’m so relieved. I know my wife is, too. But now is not the time to relax.

There are dozens of little details to cover as I prepare to move into my new outpatient apartment.

The bone marrow transplantation inpatient and outpatient staff are excellent. But they operate independently of one another, and I’m a little worried about communication problems. 

I have already run into a number of situations where one medical department assumes another had things covered.

Let me share some examples to show you what I mean and to underline how important it is to pay attention and take detailed notes.

As in most hospitals, doctors and nurses at the Moffitt Cancer Center make morning rounds. I had been experiencing some painful headaches for several days. We discussed this extensively at rounds, and all agreed something as simple as Tylenol (acetaminophen) could make my headaches go away. However, Tylenol can mask a fever, so it isn’t available to me. Neither are any of the other over-the-counter pain medications.

My only, best option is to increase my dose of oxycodone. Seems a bit silly, but I understand.

One of my physicians mentioned some follow-up testing if the headaches didn’t improve, but the consensus was to wait.

At the same meeting, one of my doctors also felt it was important to get a stool and urine sample.

Fast forward to that evening. I answered a knock at my door. There stood a tech with a wheelchair. “Time for your CT scan,” he said.

“CT scan?” I replied. “I’m not supposed to get a CT scan!” 

It was easier to go along than to argue. Presumably the test was ordered because of my headaches, even though we’d agreed not to do follow-up testing yet. At least I got to walk--and leave the unit for the first time in 15 days--wearing my Donald Duck-style face mask.

I re-stated my concerns once I arrived at the radiology department. I then made a decision:  To refuse the test and return to my room. I figured I would simply bring it up the next day at the morning rounds.

After I returned to the unit, I reminded my nurse to grab the stool and urine sample I had collected a few hours earlier.

“I’m sorry, but there isn’t an order on your chart for either sample,” my nurse explained.

Surprised? I wasn’t! This type of thing happens a lot. But I was surprised that the tests that we had decided were necessary weren’t on my chart, while the CT we had never even discussed was.

My doctor agreed with me when we discussed it today. The CT scan was not necessary and shouldn’t have been ordered. Had I not been paying attention, I would have had an unnecessary and expensive test--not to mention the added radiation exposure.

The key to a successful transition is me and you--the patient and caregiver. We are the one constant. We are the only ones in each meeting. And we are the ones who benefit most from a successful plan.

So don’t be afraid to speak up or ask questions. Take a deep breath and hold firm. If a test or change in treatment plan makes sense, great! If not, ask questions or insist on a change until they do.

Feel good and keep smiling!  Pat