The following is a report of George's health events that took place June through August regarding his lung cancer. The Caring Bridge journal entries begin in September.
George felt lousy in June, with a cough, chest pain and fatigue. After a chest x-ray, his primary care physician Dr. Joanne Lepkowski ordered a CT Scan. When she got the results on July 12, she told us he had a malignant mass in one lung and a life-threatening blood clot in the other. We went to the ER, but the docs there said the blood clot was small. They just started George on an oral blood thinner.
We met with a thoracic surgeon Axel Joob (pronounced Jobe) on July 18. He said he wasn't so sure about the cancer and ordered a PET scan. He said the mass is concerning but he wouldn't say cancer (as the radiologist had reported) without more tests. George had seen this doctor before because of two inert nodules in the lungs. Those never changed over the course of a few years.
George had the PET scan on July 26. Dr. Joob said it showed "activity" in shoulder, hip and pelvic bones, as well as the lung. George's shoulder had been hurting a lot in the summer; we thought it was arthritis.
On August 8, George had a biopsy of some bone lesion cells near the base of his spine. The doctor said it was the easiest of the three places to get the sample.
On August 15, Dr. Joob said the biopsy showed cancer in the bone areas, which came from the cancer in his lung. He said we'd see the oncologist, Dr. Mebea Aklilu, at Illinois Masonic, the following week and hear more about the cancer and treatment options. Dr. Joob also referred George to Dr. Santosh Yajnik, a radiation oncology doctor, for some "focal radiation" in the shoulder area, for George's pain.
On August 22, we met with the radiology oncologist and the medical oncologist, their nurses, and a palliative nurse practitioner at the Cancer Center at Illinois Masonic. It seems like a good place with good people. Our insurance, through the Chicago Board of Education (fought for by the Chicago Teachers Union) is good.
The medical oncologist Dr. Aklilu said George has Stage 4 lung cancer that has spread to several areas in his bones (shoulder, spine, hip, pelvis) and lymph nodes. He said average life expectancy with treatment is one year or two, depending on the kind cancer cells and how it will be treated. Treatment is to control the cancer, which is probably incurable. The doctor said it was not typical that his (small) lung tumor metastasized to his bones so quickly. (I asked.) An appointment was scheduled for two weeks from then, after the lab has looked at the biopsy sample taken in August. They're looking for proteins or mutations – to determine the systemic treatment. This is whether he'll take chemo or something else. I think he said the cancer is the small cell variety and is amino carcinoma (from the glands). The radiation oncologist Dr. Yajnik ordered five courses of radiation in the shoulder and near his tailbone, with the goal of easing his pain.
The palliative nurse prescribed slow release morphine and some other stuff (that he's already been on) as needed for breakthrough pain. He was also given something for the cough, which may or may not help, doctor said, and some stuff for inevitable constipation from the added opioids.
The next day, on August 23, George drove himself to the Cancer Center, accompanied by Josh (because Sam was busy and I had to go to work), who helped him during his radiation "planning session." Later that night he fell to the floor, woozy from the pain killers. Sam lifted him up.
George had his first radiation appointment on Friday, August 24. We felt pretty happy to begin doing something after being pretty sure for six weeks that he has cancer.
For three days he tried morphine, but it really bothered him, while not helping that much with pain. On Saturday, August 25 he decided to stop taking it. He couldn't function well at all. He could barely walk and had a hard time moving his arms and even gripping things.
On Monday, August 27, the palliative care nurse practitioner visited in the morning and planned some different pain meds. He went to radiation that afternoon.
On Tuesday, August 28, on our way to his radiation appointment at 1 p.m., George got disoriented. He was breathing weird and was really agitated. Our nurse had warned us about dehydration and everyone is pretty sure that's what happened and why he got so sick. He had barely eaten food and he had drank little for about five or six days while taking so much pain meds and getting the first two doses of radiation.
So, instead of his treatment, the radiologist nurse and doctor sent us to the ER,. We were there from 2 to midnight. George was very out of it, disoriented, trying to get out of bed, begging me more than 100 times to help him get up (but the ER people didn't want him to stand), drugged (they wanted him calm for another CT scan), and hurting. Even before cancer, George has hurt a lot in his back. Being on his back that whole time in the ER really hurt. The IV fluids and oxygen helped. The CT scan shows more lesions in his liver.
On Wednesday, August 29, he got some sleep and ate a little and had the radiation treatment. He stayed the night in the hospital and then had another radiation appointment on Thursday, August 30. He also had an MRI of the brain and an ultra sound of the heart. The nuerologist said he's had small strokes. The cardiologist said he's had heart attacks. We went home late that night. On Friday, August 31, I went to work and Danny (who came in to visit on the 28th) and Sam took George for his final radiation and a meeting with his radiologist.
On Saturday, Sept. 1, I called his primary care doc and asked her to get the ball rolling on ordering a hospital bed and bedside commode for our house. My mom brought over a shower chair. He visited a little with my mom and Dan. In the past week he has little interest in talking to anyone, on the phone or in person. Later, George had a very rough night, coughing a lot.