2019 has been a very difficult year for me on a personal level, in fact the most difficult I can remember. I just got back last week from spending 5 weeks in Holland, and I finally feel like I can put some of my thoughts into words and share what I’ve been through this past year. I’ve been almost invisible on this blog because I’ve had other, more important, things on my mind. Whether I can find back my enjoyment of writing about things or not will determine if I will start writing again. Right now I feel very empty, and I have no desire to write at all.
I am at heart a very private person and don’t really want to show my inner most thoughts (ha! funny if you look at how long this post is). On the other hand, I feel like I want to write about it, because it might help to deal with it that way. I’m sorry if I ramble on, I just wanted to get this off my chest.
A Good Start is Half the Work
The year 2019 started with three big ones. First, I’m going through some medical stuff related to my lungs, and January 3 was the first of MANY tests and visits to a long list of doctors throughout the year. Initially it looked like it could be very serious, but fortunately I have no life threatening condition, and I’m expected to recover completely (well for the most part).
Second, we were trying to deal with a personal family matter that involves one of the most important people in my life. I am so SO happy to say that this situation has been resolved for the most part, but during the first half of the year it was not certain that this would be possible. Extremely personal, extremely troubling.
Lastly, my work situation was going through a big change. Back in 2017 I had made a significant investment to buy myself into a partnership with a lot of promise, and by the end of 2018 the situation had completely imploded. I still do not understand how badly I could have misjudged this situation (well one person really).
These three things alone were completely dominating my every thought. I was walking around with a big knot in the pit of my stomach. If that wasn’t enough, I was about to get some really disturbing news…
Meanwhile, in Holland
About 10 years prior my mom had beaten kidney cancer, and in Holland that means you get screened every year for 10 years. This year was her last screening, and in January they discovered a mass in her lungs: it was lung cancer, it was malignant. Over the next few months she’d go through chemo and radiation, and she was expected to completely recover from this without a problem, they got it early so the tumor was only the size of a peanut. In April I went to Holland for a couple of weeks to be there for moral support. When I was there, I noticed that my dad was having some trouble breathing.
After I got back to the US, another mass was found in her lung, which they were going to surgically remove at the end of May. Meanwhile, my dad was having more and more trouble breathing, and experiencing intense pain in his chest and back. As my mom was recovering from her surgery (she was literally in the recovery room at the hospital), my dad went into the same hospital, to the same lung doctor as my mom, for his breathing problems and to get tested, scanned, and prodded. On June 11 we received his diagnosis: stage 4 lung cancer, it has spread to other organs and his spine, no recovery possible, outlook not very good although no doctor was willing to give an actual time frame. As my mom was declared ‘clean’ (scheduled for a follow up mid September), my dad was basically given a death sentence.
The only thing they could really do was try to slow down the progress and keep him ‘comfortable’. Now if you have any experience with cancer, you know what a fucking crock of shit that is. There is nothing ‘comfortable’ about this. Nobody gave us a concrete prognosis, so there was no way to tell how much time we really had with him. It was clear though that this was it, my dad would not grow old…
My wife is a nurse, and she immediately got very business-like. She did not want to alarm me, but she basically insisted that we book a couple of tickets to Holland right away to spend some quality time with my dad, in person, while he was still capable. The general prognosis for stage 4 lung cancer is just a couple of months, despite the hopeful message that the doctors like to give people. The statistics of 6 months to a year are really the exception, most lung cancer patients at that stage don’t make it past 3-4 months.
We traveled to Holland in early August and stayed with my parents. The two of us did some touristy stuff, but neither one of my parents were up to do anything with us. My dad’s pain was so severe that he could really only sit up for meals, and the rest of the time he had to lay down to relieve his pain. My mom was doing pretty well, considering, but she was not strong enough to go out and do much more than just some grocery shopping. It was heartbreaking, and I can’t describe how difficult it was to live through it, but we said our goodbyes to my dad and traveled back home knowing that we would never see him alive again.
More Bad News from Holland
As August was drawing to a close, my dad called on a Wednesday night. He’d been taken to the hospital because his pain was just unbearable. They took more images and discovered that his body was just riddled with cancer, most urgently his liver. At this point it was a matter of days until the cancer would take him, and he was done fighting.
My dad had decided to move to a hospice and opt for something called ‘palliative sedation’, where they give you a sedative that is strong enough to go to sleep, and they discontinue food and liquids. The result is that you die in your sleep, usually within 2-3 days. This sounds really bad, and especially for people from countries where this is taboo quite concerning. If you want to say something, please send me a private message. I’d be happy to tell you all about it. Euthanasia is legal in Holland, but the process is very strictly regulated and actually quite difficult to get through it. Palliative sedation is something that is not quite euthanasia, but still a way to have control over your own end of life planning. To put it bluntly, euthanasia takes about 2 weeks from when you start the process to the moment of death, and my dad didn’t have that much time.
Anyway, he had made arrangements to go to sleep the following Monday. All of a sudden, there was a date, it was no longer theoretical….. Just a couple of weeks after I had seen him in person, he had gone from being able to walk around the house to being in so much pain that staying alive was too painful for him.
Another Unexpected Trip
I was planning to stay in the US at the end. I had talked about this with my wife, my parents and my siblings. After all, we had said our goodbyes, and I was at peace with that. Now that there was a date though, I could not stay away. It cost a fortune (PURE greed by the airlines, taking advantage of people’s need to travel at a short notice), but I booked the next flight to Amsterdam.
By the time I arrived in Holland, my dad was at the hospice, and they had switched him to ‘the good drugs’. His pain was bearable (which they had not been able to do at the hospital), so much so that he changed his mind about starting the sedation on Monday. He was able to stay with us for another few days, and spend some time with his family and friends. He declined fast though…. the cancer was eating him alive very rapidly.
Losing My Dad
On Sunday September 8, 2019, about half an hour before my 50th birthday, my dad passed away. My sister was with him when it happened, my mom and I went to the hospice to prepare my dad for the funeral. We scheduled the cremation in private for Thursday, since my flight back home was Saturday, with a public wake on Wednesday.
At this point, my mom was not eating well, and she was complaining about pain in the same area of her body as my dad. My sister and I were concerned, but we did not think it was anything super serious. We thought she just didn’t have much of an appetite because of the circumstances. She was declared clean just a couple of months ago, so we did not suspect anything serious.
It was almost as if she had kept up appearances though, because as soon as my dad died, my mom basically went to bed and didn’t come out. We thought she was just grieving, but after a couple of days it was clear that something was very wrong. An echo showed an enlarged liver, and she was scheduled to go back for a follow up on Friday, the day after my dad’s cremation. She was not healthy enough to come to the wake on Wednesday, and as we were getting ready to go to my dad’s cremation on Thursday, we had to call an ambulance to take my mom to the hospital. I cannot tell you how disturbing it is to be at your dad’s cremation while not knowing what is going on with your mom…
Losing My Mom
We did visit my mom in the ICU that night. She was dehydrated, undernourished, and all sorts of vital signs were not good. We were very anxious for the results of her tests, which we got the morning after.
Remember, this is the lung/oncology team that had initially treated my mom’s lung cancer, and then my dad’s lung cancer. My dad had passed away just a few days ago, and now my mom was in the ICU. When they walked into my mom’s room they all looked totally defeated, one of them even in tears. Her lung cancer had come back, and it had pretty much destroyed her liver. No more treatment was indicated. We talked about options for ‘making her as comfortable as possible’ (there’s that fucking word again), and my mom decided that she did not want to go to the hospice, she wanted to stay in the hospital. This was Friday morning September 13.
Unfortunately, there was no time for my mom to visit with any friends or family. She was so far gone that we couldn’t even have a proper conversation with her anymore. Just two days later, on Sunday September 15, she passed away, less than a week after my dad.
Within less than one week, I lost both my parents, to fucking lung cancer.
Three More Weeks
There was no way that I was going to leave my sister to deal with this by herself, so I extended my stay in Holland, and I spent another 3 weeks there.
My parents’ house was just an empty shell, just a building with furniture and all the stuff that they had collected over the span of their lives. We had to arrange for my mom’s cremation, and then the estate. It is SO strange to go around and ask friends and family if there are any things that they would like to have, things that have meaning to them. There were instruments for people that used to play with my dad. Paintings that my mom had made with sentimental meaning to certain people. One of my friends has a son in college, and we gave pretty much all of the kitchenware to him, in case he decides to move out. We were very lucky that we did not have any big conflicts, there were no fights over any tangible items.
We did not have a wake for my mom, we were just not up for it. We did end up arranging a spot in the ‘urn garden’ at a cemetery close to where they lived, and my sister arranged fora very nice plaque to commemorate them.
Update Feb 3, 2020: Added images
The rest of those three weeks my sister and I spent a LOT of time together, did some of the estate planning, and I ate away my misery.
Life Goes On
So… what now? I don’t know, to be honest. I have about 20 pounds to lose so I should probably start exercising and eating better. I live in one of the most beautiful places on earth, so there are lots of hiking options available. Maybe I’ll start listening to audio books instead of reading the utterly depressing news.
One thing that I realized is that people can be real human beings. These past 5 weeks I was surrounded by SO MUCH love. So many people reached out to send us support, and I cannot tell you how much that meant to me and my family. The meal service from my sister’s coworkers was such a heart warming gesture, they really put a ton of love in all of those dishes. Spending a ton of time with my sister was very good for me. It was great to get to know her family much better, and my niece and I are very close as well as a result.
As for the community… Hopefully you’ll understand that I didn’t have it in me to do much of anything, I’ve had other (more important) things on my mind. The demise of CRS (it really does not exist anymore beyond the personal company of one of the ‘partners’) means that I don’t have direct access to a lot of the latest new stuff anymore from that side. The MVP program is not really organizing anything for the MVPs anymore, so there’s not a lot of new stuff coming from that direction. I do still have to figure out a ton of stuff for my clients, so I do have plenty to share. I’ll try to catch back up for the rest of this year, maybe the start of 2020 I’ll find some inspiration. I am thinking I might start creating short videos to supplement the blog, but if I do I want to make that into something nice. I don’t really know, I do want to pick this back up so stay tuned.
Anyway, this post turned out to be WAY longer than I planned, but once I started writing it just kind of fell out of my mind.