The Next Phase - treatment, hopes and prayers

 My wife’s second surgery was in the last week of June, a few days before her 72nd birthday. It went well - the surgeon said they were able to remove as much as of the tumor as possible, and Jan came out in good shape. It’s amazing how quickly you recover from what used to require long stays in the hospital. Jan spent all of two nights there, before they discharged her. She was in better shape this time around, and best of all, she had continuous care and contact from the surgical and oncology staff now. That was a relief compared to her previous experience. I had someone to call now if anything went wrong.

The next steps after surgery for glioblastoma, is 6 weeks of radiation and chemotherapy, which in theory, could push the cancer into something close to remission. The question is when it will start to spread again. If the cells have the various gene markers which make them more susceptible to treatment, it could be 2 years, or even 5 years (very low %). With the wildtype, it is just a hope and prayer. My wife intended to fight it, and had a positive attitude. I just prayed a lot.

We now had to wait 4 or 5 weeks for the brain to heal and settle down before they could start the next phase of treatment. I was nervous about waiting so long without doing anything to attack the cancer, but this was the standard process. My wife was up and about during this time, and we even did a trip to the North Coast, near Mendocino. My wife was able to do a little hiking, and even made it up to the top of lighthouse. She was tired and weak though, and that was probably a bit too much for her. We wound up leaving a day early as she was getting headaches, we wanted to make sure we were back in time for a meeting with the radiology team. 

Radiation treatment for brain cancer is fortunately, fast a painless. My wife had to go 5 days a week for six weeks, and the actual process only lasted for a few minutes. She was always upbeat, and other than losing hair around the treated area, she had few side effects. What was difficult was seeing all the other cancer patients in the waiting area - for many of them, it was a painful procedure, and the overall mood in the room was very depressing. These people all had some type of cancer, so I would not expect it to be upbeat.


The chemotherapy for brain cancer is different from other forms of the disease, since there are only a few drugs which can penetrate the blood brain barrier and neither is highly effective. The standard which my wife received orally 7 days a week for 6 weeks, was pretty much useless - I’ll discuss the side effects in a later post. 


During this six week period, we met with both the radiologist and our oncologist on a regular basis. Both were excellent, focusing on the treatment and avoiding discussion on the “elephant in the room”. Our oncologist said he would not discuss specifics on survivability since these would just be speculation - they really could not tell at this point the effectiveness of the treatment, or how long it would be until the cancer spread again. They were not hiding any information, just trying to keep the patient from stressing out. But for anyone who has done research on this type of cancer, and there is an enormous amount of detailed medical information easily available on the internet, it was fairly obvious what the outcome would be. The treatment for glioblastoma is really all about hope and prayer that the cancer will not spread for a while - only 1% make it five years. The odds are not with you. Some patients when face with a diagnosis of glioblastoma decline all treatment, and opt for MAID (medical assistance in dying), controlling the eventual outcome iunder their own terms.


For me, the six weeks of treatment were my first introduction to life as a 24X7 caregiver. Each day I had to make sure my wife received the correct dosage of various drugs, transport her to the cancer center, make sure she was comfortable for the rest of the day, and found things for us to do, and in general, keep her happy if possible.


I was still able to leave by herself for a while, so that I could work out or take walks, but most of my time was now spent at home with her. And keeping my focus on her, and not going insane from worrying.


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