The Search for Treatment

 Once Jan was released from the hospital, my life was focused on finding the best possible cancer center to continue Jan’s treatment. At this point, we did not have the results from the biopsy, nor did we even have a doctor to help with Jan’s post-op issues. Mercy left us hanging in the breeze - Jan just had brain surgery and we had no clue who to call when she was feeling unwell, We could not even get an appointment with someone to remove her stitches. 

The main focus though was finding somewhere/somone to handle the real treatment - that would be resection surgery followed by radiation and chemotherapy. With the help of a former neighbor who happened to be an oncologist with contacts at UC Davis, I followed his recommendations in applying to 3 different hospitals - one local (UC Davis) and two in the Bay Area (Stanford and UC SanFrancisco). All three are excellent, but of course, Stanford and UCSF would require a lot of travel. I was able to make contact with all three prior to Jan’s release - I was already in overdrive. Staying focused kept me from going insane. Stanford’s Cancer Center was the first to respond with an actual appointment, to meet with an oncologist. We made the drive, staying overnight, and met with one of the staff oncologists, specializing in brain tumors. The center was beautiful, and the staff was great. But, the prognosis was the same as what we were told at Mercy - they just more pleasant in the delivery. One treatment that they pushed, was a device that you wear 20 hours a day, requiring the patient to shave their head, wear an array of sensor on the head which are plugged into a battery pack you wear all day in a small backpack. It did show some success in delaying the tumor growth (ultrasound), with increase survivorship measure in months, possibly a year. This was not a cure, just a delay of the inevitable. Jan immediately declined the option, purely on quality of life. It was not worth it to her, for a few extra months. Given how extreme her cancer was, I’m not sure it would have made a difference.

At any rate, we continued along with Stanford, and did a return trip for more detailed MRI’s and then met with one of their neuro-surgeons to discuss the next step. We had decided at that point to go with Stanford for surgery, and then use UC Davis for the chemo and radiation since they were a bit slow getting Jan onboard - the head oncologist was on vacation. UCSF for some reason, was extremely slow in response, so we never did follow up with them. So, at this point, we had a date set for the surgery at the end of June.

During this time, Jan was mostly OK, but it was struggle getting help when she needed it. We finally did get an appointment to meet with a Mercy surgeon to have her staples removed - that was nearly impossible and drove me crazy trying to get a reasonable date. The doctor was really obnoxious - he flat out told us that Jan was going to die. I realize now that it was inevitable, and he was correct that she had less than a year, but he did not have to be that blunt. We left the office in a state of shock, and headed straight to a Dairy Queen - that always worked for us when things were going bad. Jan still was not accepting the fact that she had cancer, but this hit her hard. But, we decided to do everything possible to fight it and take it day by day.

Jan did have some pain issues, mostly due to the skin and bone healing, and we wound up getting her into the the UC Davis Folsom office, with a really go PCP who gave her a thorough exam, and prescribe some pain killers for her. That was the first physician she had seen in a while. Thanks Mercy/Diginity Health for all the support. Fuckers. What this physician also did, bless her heart, was put a referral in to the best neuro-surgeon at UC Davis. More on that in a below.

A few weeks before Jan was scheduled for surgery, I received a call from the nurse for this neuro-surgeon, who wanted to give a second opinion. I looked up his resume online, and immediately agreed - he was the top surgeon at UCD, and came from the UCSF Brain Tumor Center. We met with him a few days later, and after a few minutes, Jan was already convinced that we needed to switch to him. I agreed. He had an opening a few days later for the surgery, so we cancelled Stanford and got ready for her second brain surgery. He had described an experimental procedure he created and would use, which marks the cancer cells that need to be removed, providing more accuracy in the resection procedure. It is nearly impossible to remove all the glioblastoma cancer cells - that why it is a fatal disease. But this procedure at least has a better chance of getting more of the little bastards, and then maybe the radiation will kill the rest. So we hoped. Also around then, we were contact by the head oncologist, so Jan was finally all set for her treatment. 

Jan was doing fairly well all things considered into mid-June. She was in good spirits, could still read, user the computer and iPad, but was missing words which was difficult for her, and even worse, was having problems with numbers. Given that she spent a lot of time doing spreadsheets, this was a major setback for her. She also could not drive due to the loss of peripheral vision, and was now totally dependent on me for most everything. But, we went shopping, went to dinner, cooked - not a normal life, given that she had this huge scar on her head, but we were managing. The worst change was the 500 pound gorilla in the room - glioblastoma. I was not allowed to say cancer to her, and we did not really talk about the future too much. I thought about it every day, and ran off to cry by myself since I had done research on the disease, and already knew what was probably coming. We had received the results of the biopsy, and she had what was called IDH Wildtype. This classification meant that the cancer cells had none of the mutation that made the cells more susceptible to the standard treatments and clinical trials. With the mutation, you had a chance of getting 2 years, and possibly up to 5 years. Without these mutation, you were on the low-end for survival. Fuck. 

During this time, we decided to try taking a trip somewhere - Jan was really bored and wanted to get out of the house. So, we set out to visit family in Westlake Village, outside of LA, with a stop in Paso Robles to visit some wineries. My wife was OK on the trip down - we made it without any issues, and went out to dinner at a place we normally eat at. Jan was complaining about the bathroom though - the toilet was incredibly small, and she was not quite as stable as she normally would be. Dinner was OK at first, but Jan had a very large martini, followed by a glass of wine, and it went right to her head. She was falling over where she was seated, and slurring words. Not drunk - I think the alcohol just had a bad reaction with all the other drugs she was taking. I had to help her across the parking lot to our hotel, and then she took a bad fall in the bathroom. We stayed on more night, but cancelled the rest of the trip and retuned home. This was something that happened a few times - Jan could not handle that much alcohol anymore.

I was handling the stress OK during this period, but had frequent breakdowns when I was by myself. I could still leave Jan alone then, and still played tennis and worked out at the club. When I was doing that or taking walks, I would usually have a minor meltdown, while wondering what my life was going to be like if Jan was gone. I had no clue. 

Next post will cover the surgery, and the start of treatment.