My Story

A little background; I met Bill the day before Super Bowl in 2005. I was at a local restaurant, Andrew’s, sitting at the bar with a girlfriend who was a neighbor of mine in the development where I owned a home in the desert. It was a busy night and at one point a couple of guys had come in and were standing not far behind my friend and me. Soon I was talking to the two of them. 

Turned out one of them, Bob, was a very well known restaurant owner in the desert and he and Bill had had dinner at the place next door, Desert Sage, and decided to come see what was shakin’.  

Three months later, Bill and I were married in the courtyard of Desert Sage!

11 years later he would be dead.

As I’m writing this, I’m sitting on a plane headed to SFO and then to Spain. It’s the 2ndyear anniversary of Bill’s death. August 25th.

I read or heard once someone say, “I want to live life, not just go through it”. And that’s how I feel.

Bill was a great guy. In the 11 years of our life together, he never once let me open my own door and that was just the beginning of it. He was a true gentleman. Honest to a fault, always striving to be better and to improve others lives. 

Even when he was in the midst of the ten weeks of living hell of being diagnosed with the glioblastoma, he always kept his sense of humor. The doctors would ask him how he was feeling and he would reply “With my hands”.  He had a very dry sense of humor and I loved him. He could always make me laugh.

Every single morning as I walk the 5 minutes to the gym where I live, I have a conversation with him, and again when I walk back. I repeat the greeting that he said to me every morning, and my reply.

I talk to him about the business, about our cats (now just cat, as Spencer had to be put to sleep last September, for of all things, tumors), about everything going on in my life.

I hope he is looking after me. I know that if he is able, he is. And regardless, I always have his voice in my head and him in my heart.

I feel like there has to be some reason for God to have taken such a good guy. Bill believed in God, went to church, gave generously to those in need, and was a wonderful husband and cat daddy.

Throughout this journey, I’ve come to the conclusion that his death, and the deaths of all the good people that happen on a daily basis, must be to make those of us that are still here, better people. 

But how do we get there when we are so grief-stricken, so out of our minds, and feel like we can barely function?

For me, I read a lot. Bill and I were both voracious readers, and we would research the heck out of anything and everything in order to understand it. 

This is why I’m writing. Finding the printed words of others that have come before me was a tremendous help. I hope that my experience and sharing might help you.

June 1, 2016

Bill had been feeling out of sorts for while and had gone to the doctor who told him that he had a virus. He had been having pain in his right leg and then thought that he had a sinus infection. I didn’t buy the virus diagnosis. On this morning, he lost control of his bladder while standing in front of his bathroom sink. He had a look on his face that I’d never seen before. Like he didn’t realize what had happened. His sister had just passed away in February from a stroke, and although she was 15 years older than Bill, and he was healthy, I was afraid that something might be wrong. This freaked me out, but it was strange, as he seemed pretty normal other than that. I insisted that he go see the doctor that day and I called and got him an appointment that afternoon. 

The doctor asked a lot of questions, took blood, and said we had to wait for the results. We get the results a few days later and they say there is nothing wrong with him.

In the meantime, he sent a couple of emails that just didn’t make sense to me.  He ran the marketing and financial side of our business (he really did the job of about 4 people), and he was always very precise. He just seemed “off”.

It seemed to me that he was missing the connection ever so slightly and based on my years of watching medical dramas on television, I figured what he really needed was an MRI as it seemed to me it was neurological in nature. 

I called the doctor’s office to schedule an MRI and they told me it would be about a week. Bill really didn’t want to go and didn’t want me to schedule it.

June 7, 2016

That morning, I stood in front of Bill’s desk at home and told him that I was not moving until he got into the vehicle with me and I was taking him to Urgent Care to get an MRI. He didn’t want to go, but I got mad and told him I was afraid that he was going to drop dead on me. He finally agreed and off we went.

I remember driving to the hospital, Bill in the passenger seat, me looking at him, and thinking, “Life will never be the same”. I was right. 

I had absolutely no experience with hospitals and didn’t realize that you couldn’t get an MRI at Urgent Care. They saw us, but said the best thing to do would be to go to the ER in order to get it done right away. Next stop the ER.

I had never been to the hospital. I knew where it was, but little did I know I was about to enter a world that I hope to God I never have to deal with again.

11 hours after checking in to the ER, we were checking Bill into the Renker Pavillion at Eisenhower after being told that the MRI came back with a brain tumor. 

Bill never drove again, as I wouldn’t let him and the doctors didn’t think he should.

That began the beginning of the nightmare.

September 9, 2018

I should be on a flight home right now, but instead I’m sitting in the airport in Munich waiting for a flight as I missed the connection to SFO due to a delayed flight from Sevilla.

It’s times like these that I really just want to cry from feeling so alone. This morning was very hard. The trip has been great, but I find that I miss the time alone in the mornings to have my chat with Bill. It kind of sets me up for the rest of the day. 

This is the first longer trip I’ve taken since he’s been gone and I find myself thinking of the things he would have liked about it and the things he wouldn’t have. Truth be told, it really wouldn’t have been his preferred manner of travel. The hotels were a little too “rustic” for him, although he always really liked everything about Rick Steves’ philosophy. 

At any rate, I have a lot of time until my flight, so I’m going to try and write a bit. 

June 8, 2016

I went home after getting Bill checked in to feed and take care of our cats. I think I was just in complete shock. I know that I let my mom, my team, and Bill’s best friend and his wife know about the tumor, but at that point, we didn’t know what kind or what they could do about it. 

I continued to go to the gym every morning and read everything I could get my hands on on my iPad while I was on the elipitical. I went to work every day and then to the hospital and stayed with Bill until after dinner, and then home to the cats and some sleep. 

He ended up being in the hospital for four days while they ran test after test, all with no results that told them anything helpful.

They strange thing is that I really don’t remember talking to Bill much about the tumor. Only that we were trying to figure it out. I also didn’t take any notes about how he was acting, only notes that I would get from the doctors. 

It seems to me that he changed almost immediately after the diagnosis. He was very quiet, could only speak in a whisper, with an occasional “Hello Babycakes” in a normal voice, started having trouble writing, walking, remembering, etc…

They sent him home to wait for one more test that I think was some kind of a fluid test that might tell them more. That test didn’t tell them anything either.

In the meantime I was researching like a crazy person, everything that I could find out about brain tumors. Of the different kinds that a person could have, a glioblastoma is the worst one. Based on what I was reading, that was what I knew they were going to tell us Bill had. Additionally, I tried to find any information about people surviving them. There was one woman whose husband was still living after a decent amount of years, but her blog was a couple of years old with no recent updates. I reached out to her anyway as I needed to hear something that was hopeful. She did respond to me. Her husband was still alive, although he had what they call “failure to initiate”. That was a term that I became familiar with as it’s what happens when the signals don’t get to the brain to do the things that you’d normally do.

June 21, 2016

Bill had a biopsy of the tumor done. Now we wait to find out what we are dealing with. I remember going to dinner with him a few days after it was done. He was walking very slowly and could only whisper, but he was able to go out. The last dinner we went to together was at Bucatini, which is just a few steps away from my office and we were regulars there several times a week. The owner and his family were good friends. Thinking back it makes me cry to remember sitting there with him that last time.

June 24, 2016

Bill’s birthday and the day they told me that Bill had a glioblastoma, stage 4. We made an appointment with the brain surgeon in Rancho Mirage, which consisted of him saying that they were not equipped to do surgery on Bill as they only did “run of the mill” surgeries. Clearly this was not that. I don’t ever remember telling Bill exactly what he had. I know the doctors talked about it, but I’m not sure that he was able to comprehend what that meant.

Mainly I was just trying to deal with the news on a daily basis and try and figure out how to save him.

June 29, 2016

We got an appointment with the rock star of brain surgeons at Moore’s Cancer Center in San Diego.  We went down the night before and I remember sitting having dinner at the bar in the hotel with Bill. He couldn’t talk much but he could still walk.

The next morning after we parked, we were walking to the Center and Bill’s legs collapsed and he fell to the pavement. Several guys rushed to help me get him up. They knew, even if I didn’t, what was happening.

The surgeon looked at Bill’s records and spoke to the two of us. We also met with the onocologist, who was very well known as well. They spoke about “quality of life”, and how there was no guarantee that they could get the whole tumor, how there would be radiation and chemo afterwards. All I knew was that we had the best surgeon and that he was the guy to save Bill. We made the appointment for the first available time and off I went to the onsite pharmacy to get the bag of medications that Bill was going to need afterwards.

I don’t know when it started, I suppose right from the beginning, but Bill had to take medication to prevent any seziures, along with several others that now I don’t even recall what they are for (although they are in a bag in my garage, so I could go take a look). Some were every 6 hours, some at other intervals. I remember having a chart where I’d hash mark them off as I gave them to him, in order to not screw it up. I also had the alarm on my clock set in order to make sure the timing was right. I just know that Bill hated having me make him wake up to take them, and I also got him up at 5 to use the bathroom because at some point he no longer had any control and so I was making runs to the store to find adult Depends. I was also changing the sheets and doing loads of laundry multiple times a day as the Depends were not failsafe. I put layers of pool towels down in case of any accidents in order to try and mitigate the damage. If I could get him up and into the bathroom, he’d probably be good until I got him out of bed around 9.

One of the things that was a sign, but I didn’t know it at the time, was that he fell asleep in front of the TV one night, which he never did. I think he stayed there until I woke up and went and got him. 

The other thing was the weakness in his right leg and foot. Turns out that is a sign as well.

All along, I was still getting up, now making Bill his breakfast (he used to do it for both of us), going to the gym for an hour, coming back, getting ready, and going to work. 

He never wanted to get up and now I know that that’s what happens. You want to sleep. Trying to get a 6’2”, 200 lb guy up out of a low bed, became a daily struggle. It’s a wonder I didn’t throw my shoulders or back out. I devised a way where I’d levered myself against the bed, take Bill’s arms and give it a “One, two, three”. Sometimes he’d do it and sometimes not. I’d shuffle him into the bathroom and hope that he would go. Then he’d go back to bed until I tried to get him up before I’d go to work.

One morning, I think it was before the biopsy, I came back from the gym and he was on the computer in our online banking. I asked him what he was doing and he said “working”. He had the best work ethic of anyone I’ve ever met and even sick he was trying to do the usual activities. Problem was I was afraid he’d mess something up. It was that day that I changed his password. That really killed me because he lived on the computer all day typically. But I was afraid. I had already gotten his master password, so I had access to everything. I started contacting our vendors so that I could keep on top of things. 

One of the worst days was when I came home from work and found him sitting on the kitchen barstool where I had left him hours before. He had the “failure to initiate”, where he couldn’t control his bodily functions. He hadn’t made it to the bathroom and had sat there on the stool for hours in the mess.

What I want to know if why none of the medical professionals bother to tell you any of these things or how to handle them? I had zero experience with anything like this before and I was not warned about any of it. They leave it up to you to figure it out as you go. I really don’t know how an older person or someone with no resources to figure things out would get along? Or if Bill had been on his own, what would have happened to him? It’s really frightening.

July 7, 2016

I drive Bill to San Diego, this time to have the surgery. There must have been 40 or so medical personel in attendance as this procedure was done in the MRI. I kissed him as he lay on the gurney and then I left for a while as the doctor would let me know when they were done and the hotel was only a 10 minute walk away. They said we would be able to go home in two days, which became 4. 

Since he was sleeping most of the day except for meal periods, I walked around the neighborhood in order to not go crazy.

One day as I was walking back to the hospital, I came across an older guy in a wheelchair with a bladder bag. The small wheel had the rubber come off of it and he asked me if I could put it back on. So I started to try and then a guy came out of the house we were in front of and offered to help. His really large hands were much better suited to it and he got the job done. As I was walking, I thought, you know, even though my husband is in the hospital with a brain tumor, it could be worse.

July 12, 2016

The idea is that we were to go home after the surgery. The reality was that the surgeon, who knew what I was in for, even though I did not, realized that there was no way that Bill should be home without medical care. So he arranged to have him to the Rehab section of Eisenhower where Bill would have 3 hours a day of PT. Physical, Speech, and I can’t even remember what the last one was. 

Thus started our new “normal” routine of me going to work during the day and then going to the hospital around 4 every day and staying until about 8. Every night I’d get a copy of the next day’s schedule for Bill, and I’d time my calls to the doctors and to him based on that. 

 Signs That Something Was Wrong

Texts/Not responding/responding strangely…

Fell in the sand in Laugna/another sign that I didn’t recognize.

 At Eisenhower Rehab

Attended the cancer group meeting early on. Bill said he was afraid for me. Now in a wheelchair, but doing PT with a walker. I’d wheel him around.

After three weeks they wanted to kick him out. Had to fight to keep him in. Meeting with liason for home health, which was useless.

Bill said “They don’t know you”. This was in response to them telling me something that I refused to accept.

Aug 2, 2016

They release Bill home on a Tuesday. Home health guy comes. By Friday it’s clear that this is not working. Bill has been to about 10 days of radiation and they stopped the chemo as his blood couldn’t handle it. From our home, it’s a 35 minute drive to the radiation place, but it takes about half an hour to try and get Bill in my Range Rover. He can’t walk. He doesn’t want to eat. I’m hounding the doctors and now telling the ones in SD that they have to do something. 

Aug 6, 2016

After three days of poor Bill being in a living hell at home, and me on the phone and email to his doctors in San Diego, they tell me to take him to the ER in SD and they’ll get him checked into and into a place down there to continue his radiation.

To be continued….