First surgery and cast adrift

 I may at some future date go into more detail on the next few days at Mercy Hospital, but I’d like to move onto other topics. If I had known that they had almost killed Jan with their mis-diagnosis, I never would have let them do surgery on her. The post-op support was absolutely miserable, so there was no question in my mind after the first few weeks that we would go elsewhere for the next phase of her treatment.

A small aside here. There will be a lot of these. Glioblastoma, which we did not know for sure was what she had, is a death sentence. The treatment is really just a means of extending your life, measured in months, and a hope and prayer that a cure will be found. I’ll go into this a bit more later on. But at first, you do have that hope, especially when they have not done the biopsy yet.

So Jan had numerous tests in the next few days, and we had meetings with the surgeon and neurologists leading up to that day. The nurse staff was wonderful, and they even moved her into a great suite the night before the surgery. The day of her surgery, I was with her when they wheeled her off to the OR - Jan was in high spirits (that hope thing), and joked around with the anethesiologist. This is serious surgery - they have to first bolt your head down to a table shave part of your head, pull the scalp away, then drill a hole in the skull large enough to get all the tools in. And then they have to very carefully poke around in the tumor, scraping out cancer cells and cleaning out the vascular system the tumor created, without spilling blood. It’s risky and time consuming for the surgeon.  So, off she went, and I headed over to a friends house to wait out what was supposed to be about a five hour procedure.  I returned to the waiting room an hour before the scheduled time, to make sure I was there when they were finished. I could have stayed away for a lot longer. The hours just rolled by, way after the receptionist in the waiting room left for the day. Finally, after about 7 hours, the surgeon came out to talk to me - it was not a pleasant conversation. He said that the tumor was ‘too vascular’ to resection, so all he was able to do was the biopsy, and some re-organization of the blood vessels’. Then he told me that it was likely glioblastoma, and that we should start looking into short term travel, and as they always say, taking care of loose ends. In other words, Jan did not have much time left. Fuck.

I did get to see Jan afterwards, back in the I/C. She was groggy, and had a huge bandage on her head, but OK. I let family and friends know she was OK, but did not discuss the surgeons prognosis. I was kind of in shock. The next day, the hospital decided she was in good enough shape to release - less than a day after brain surgery. I was glad to get her home, but thought that was way too soon. Even worse, we had no support from Dignity Health once she was release. They gave me the name of someone to call to have her stitches removed, but that was it. Nobody to do a post-surgery follow up, no number to call if something went wrong, hardly any post-op instructions. They did not even get us signed up for the online system. And, they did not even consider discussing post-op treatment, even if I would not have used them, I would still have expected them to at least make an attempt to get us on board. We were literally sent adrift after fucking brain surgery for a brain tumor!

But, it was great to have her home. She looked like the Borg Queen from Star Trek, with a huge, ugly scar on one side of her head, and a lot of her hair removed. But she was alert, feeling pretty well, and home. I was exhausted, frazzled, worried…..and my work for finding treatment was just starting.

I could probably spend a lot of time venting my frustrations with Dignity Health and Mercy Hospital, but I won’t. Some of the staff we worked with were excellent, but I felt that we were left without any support after the surgery. As I contacted other cancer centers for continued treatment, it was difficult and frustrating trying to get her records transferred - I wound up going in circles at times trying to find someone to help. The key information I needed was the results of the biopsy and for some reason, it was taking forever for the labs to complete the analysis, and then even more difficult to gain access to the results. My main regret though, was not knowing enough at first to seek a second opinion on the surgery. It was incomprehensible to me, that a neurosurgeon found the tumor to be too complex to complete a resection. Jan had to have a second surgery to have that done, and by then the tumor had doubled in size, Plus, this delayed the radiation and chemo therapy by 6 or 7 weeks. That is a long time when you are dealing with an agressive brain tumor. I don’t know that the outcome would have changed, but maybe we would have had another 6 months or more, to be together. I would have sold my soul to the devil to have had that extra time with my wife.