The End of Days - Losing your soul-mate to glioblastoma

  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 i...

  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 pri...

 When my wife’s struggle with glioblastoma came to an end, one of my dearest cousins showed up at my door, and was with me when my wife passed, and then stayed with me for the following week. She, along with my friends who stayed with the until she arrived, probably save my life. A pastor from my church asked me what I would have done if I did not have that support the first week - I told her I probably would have cried myself into a fatal heart attack.  At any rate, what I meant to talk about in this post, was the strange new habits I’ve acquired since I’ve been forced into being a single person. My cousin has been single for quite some time, through divorces from bad marriages. She’s very happy with her life, has many friends and travels frequently to be with family. But one thing I noticed in the week she was here, is that she talks constantly to herself. Apparently,  when you live alone, you eventually let what runs through your mind, leak out through talking. Everyon...

 “ All the lonely people Where do they all belong? Father Mackenziе Writing the words of a sermon That no one will hеar no one comes near” Switching gears completely for a moment, being a widower has been a strange and awful experience. It’s the club no one wants to be a member of. I’ll be posting a lot more on what my life has been like since Jan passed away. But one of my more immediate issues has been loneliness - I’m referring to it as the Eleanor Rigby Syndrome. During Jan’s decline as the cancer advanced, I spent a great deal of my time responding to text messages and phone calls from friends and family, checking in on how Jan was doing, and also how I was handling the stress. Everyone knew that I was running around at 100mph, trying to do everything possible for her. Once Jan passed, that flood of well wishers has dried up to a small trickle of close friends, who check in on me at regular intervals. These are the true friends. We also had some very close friends who have not...

  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 in...

  The next morning (May 21st), I drove to the hospital not knowing what to expect. I had done some research that night on brain tumors, so I was already anxious and frazzled - I had seen the word glioblastoma associated with stage 4 cancer and read the bad news about survivability, which is pretty much 0 chance. When I entered her room in the Intensive Care ward, there she was, wide awake, still on the respirator, surrounded by nurses. There were daggers coming out of her eyes - I could see she was REALLY PISSED about the ventilator, and wanted the tube out immediately. The nurses said they needed to wait for the neurologist to come by to approve it, but Jan was not happy about waiting. I thought at one point that she was trying to pull it out, but she slapped my hand and then made a writing movement. I got her a pen and a little whiteboard, and she was able to write out that she just needed to reposition it. Which the nurses did. Eventually, they did remove the tube and quite fran...

 I’ve been giving some thought on whether to start a blog in this very sensitive and personal subject. My past attempt at blogging was for fun - climbing Half Dome in Yosemite. I enjoyed documenting all the preparation, training and the climb itself, and even had a few unknown followers beyond my friends and co-workers. This on the other hand, is not fun at all - in fact the subject is absolutely awful. But let’s give it a go since it gives me the opportunity to unload what’s on my mind each day, and possibly share some useful information on glioblastoma, care giving, and grieving. Much of what I will be posting will be about events that occurred in the past year - I have maintained a lengthy journal of my wife’s journey as well as my own experiences both during her decline, and with grieving after her death. It’s a sad story.  So let’s start at the very beginning, May 20th of 2023. It is amazing how quickly your life can turn to shit so easily. One day my wife and I were enjo...