The Bee Team

We left off with the diagnosis of Diffuse Large B Cell Lymphoma. From the first time the word cancer was mentioned as a diagnosis until the biopsy resulted was 10 days. Ten days. Ten days during which I thought I had been given a death sentence. But I was also celebrating Christmas with my husband and family while recuperating from the pleural effusion and collapsed lung.

Before I had even left the hospital we had reached out to Moffitt Cancer Center and I had been scheduled with their GI clinic for Monday 1/5. With the biopsy results changing the diagnosis, we sent them on to Moffitt and they changed my appointment to the hematology clinic on 1/2.

The day after the biopsy results the oncologist office here called and offered to get me in that same day. We met with the nurse practitioner first and then spent an hour with Dr. N. He took notes while he was explaining everything (4 pages front and back!) He would have admitted me to the hospital the next day to begin chemotherapy if I would have agreed to it. John brought up that we had already made the appointment with Moffitt for that Friday 1/2 and asked if there was any reason we couldn’t or shouldn’t keep that appointment. Dr. N said no, and that we should go and get a second opinion, and that this was the time to do it. Before I left the office they brought in Frank who drew I think 10 vials of blood. (I am not a good stick, but truth- Frank is the absolute best at blood draws, hands down.)

Late on New Year’s Day we drove over to Tampa and spent the night in a hotel in advance of a very early morning appointment at Moffitt Cancer Cetner. First there was another blood draw with another 10 vials drawn. Then I met with the nurse and the doctor and reviewed my records.

*Hot tip to all persons with complex diagnoses/care*

Create a notebook and print copies of your imaging results, visit notes, labs, etc. Bring this with you when you go to any appointment.

Because despite confirming with multiple persons that my records had been sent and received, my doctor had not seen them and she wasn’t able to access them.

Fortunately I was able to give her the printed copy of my reports so she could make a copy and review them.

Dr. K gave us very similar information that we had received in our appointment with Dr. N on Tuesday. Both doctors said that my disease is very treatable and very curable. Which was very comforting. She also said she would follow essentially the same treatment plan that Dr. N would. She did add that even if I did not respond to the traditional treatment that there are alternatives that would still result in a cure.

Based on this, we decided that pursuing treatment at home would make the most sense. So on our way out of Tampa, I called Dr. N’s office and set up my hospital admission for the wee hours of Monday morning.