We didn’t get that promised call from the colorectal surgeon last week. Oddly enough, however, Ken was contacted directly by the oncologist last Thursday morning to come into the office immediately. When an oncologist you’ve never even met calls personally and asks to see you now … well, let’s just say, we dropped everything and hurried there.

The doctor jumped right into the treatment plan. We had to interrupt him and ask for the biopsy results. Not his fault; he thought we knew. So, he slowed down and drew us a picture, literally, using the paper on the exam table. (Yep, the drawing is in the folder with all of our medical notes).  The cancer is rectal. The proposed treatment plan is chemo, radiation, surgery and then more chemo. Ken’s cancer is in the “treat to cure” category.

He examined Ken’s tumors. The cancer has spread into the groin since Ken’s surgery. The oncologist said we need to start treatment immediately. First, however, he asked me to text him the pictures Ken has been taking to document his illness. Because Ken’s cancer is so rare, the oncologist was planning to present the diagnosis and treatment plan to the tumor board. (Who even knew there was a tumor board?!)

After meeting with the oncologist, we had a marathon drug review with one of the oncology nurses. The drug regime includes Avastin, irinotecan, leucovorin, and 5-FU. The side effects include all that you would expect: hair loss, nausea, fatigue, and more. Then, we met the oncology nurses (hugs were given) and promised to “see you next Thursday!”

I spent the majority of Friday on the phone, scheduling various doctor appointments and tests in preparation for the start of chemo. Mostly, each doctor office seemed to expect us to adhere to their preferences. (Office: “your appointment is Thursday.” Me: “uh, chemo starts Thursday morning” Office: “you have to come in on Thursday” Me: “but we can’t come in on Thursday” ….) Because Ken’s condition is so rare, he is something like a juicy bone. Here’s the appointment list thus far:

• 1/4 Initial primary doctor appointment
• 1/19 Initial urologist appointment
• 1/25 “Cyst” surgery
• 2/2 Surgery follow up/biopsy results
• 2/2 CT scan
• 2/4 CT results
• 2/9 Colonoscopy
• 2/11 Oncology appointment/biopsy results
• (2/12 doctor presented to the tumor board)
• 2/17 Port surgery
• 2/18 Oncology follow up, chemo, pump provided
• 2/19 PET/CT scan
• 2/20 Chemo pump removed
• 3/3 Chemo
• 3/5 Chemo pump removed
• 3/7 Ultrasound
• 3/17 Chemo
• 3/19 Chemo pump removed

Today, we met with the oncologist again, prior to starting chemo. The treatment plan is slightly changed; the tumor area is too large for radiation.