Radiation Oncologist Part 2

The weekend after the 4th my Mom was in incredible pain. I forget the exact details but I believe she ran out of her steroid medication, the Decadron, and and she just assumed she was done with it. I believe when she realized she only had a few pills left she started using them sparingly or not at all. At some point she mentioned this to me and I was shocked. No, no she shouldn't stop taking those. She should call for a refill. The steroids were controlling her pain. Despite her being on long acting morphine three times a day, the steroids were the most beneficial. I will tell you when she was finally ordered to taper off of them late last summer was when her true decline began and she died two weeks later. I didn't realize how much the Decadron was controlling the pain and keeping any nausea and vomiting away until after she was gone. I didn't realize how much the Decadron was what was keeping her going until she was gone and I have a fair amount of guilt about that.

I'm jumping ahead and off topic but lately I am wracked with guilt of things I could've done differently that maybe would've kept her alive and improved her quality of life a little bit longer. Yes, I know I shouldn't feel that way. I tried the best I could with what I knew at the time.

Anyway...on Tuesday July 7, 2014 Carly and I accompanied her to get a radiation consult in Muncie. She had had one if some of you will remember in Ft. Wayne where Carly worked at the end of May, but at that time radiation was put off until after she finished two cycles of chemo. I believe they didn't think Mom could handle chemo and radiation at the same time in the beginning without shrinking the cancer first.

They were going to do radiation to the bone metastasis in her spine and pelvis. It was essentially going to be palliative radiation meaning it wasn't meant to cure the bone metastasis but rather shrink it to improve her pain. We were at this appointment for a total of 3 hours I believe and surprisingly I remember very, very little. I had to bring Lydia with me and perhaps I was distracted by her. She was a month old at that point, but only 6 days past her actual due date. She was still so tiny.

All I remember from that appointment is Lydia and Dr. Lin showing us Mom's actual PET scan images. I texted Carly this afternoon to see if she remembered anything else, to see if maybe something she remembered would trigger more memories for me. Her response didn't really, but I will include what she said.

"I remember Dr. Lin talking it seemed like quite a while about the progression of the cancer and the importance of letting others help as needed. Your Mom was in amazingly great spirits that day. I remember you pulling up to the door to drop her off, and she thought that was silly, she was so damn independent. I remember looking at the PET scan and thinking how strong she was, and never complained about the pain, blows my mind! Hope this helps a bit, in some ways it seems like yesterday, but at other times it seems like a lifetime ago. Love you lots luv!!"

Simply speaking a PET scan is a test where radioactive dye is injected (usually) into the body and the images help pinpoint the anatomic location of abnormal metabolic activity within the body. It was a way to get full body image of where the cancer was. The cancer would show up as "hot spots" on the images. I have had patients with PET scans ordered less than a handful of times in my healthcare career because I have never worked directly with cancer. I had never seen PET scan images until my Mom had one done.

Dr. Lin pulled up the images from her initial PET scan before she had started chemotherapy to show Carly and I. As medical professionals both Carly and I really appreciated this and were fascinated. We both stood up from our chairs to look. I swear my mouth dropped open when she pulled up the image of her lungs. Her left lung lit up like it was on fire. My God, I thought. It is hard to describe it but as a person in the medical field and as the daughter of the patient, the image was beautifully horrifying. The technology was amazing to me, the way it lit up the cancer, but to see the actual degree of her cancer was horrifying. Her pelvis and lower spine looked equally on fire due to the bone metastasis.

Dr. Lin was extremely kind and went through more information, but I don't remember anything. Lydia who had been quiet for almost 2 hours was getting upset. She was hungry. I was trying desperately to make breastfeeding work this time, but at 5 weeks out she still wouldn't latch. I had to pump milk for her and I had ran out. I had some back at Mom's apartment. We needed to go home and I was getting frustrated. Finally we were able to leave, Lydia was screaming. Carly sat in the back with her on the way home trying to calm her. Lydia's screams didn't phase Mom one bit, she was still in a great mood for which I am grateful.