About joegov

State engineer, soon to retire because a fatal brain cancer. Observations on the state bureaucracy, sudden illness, and anything else.

No excuses for your children’s behavior 

I don’t care what problem you say your children have. They can and should know the fucking basics when you bring them of not pawing and grabbing through my things, especially my electronic things like iPads and iPhones. If they don’t follow the basic rules of courtesy don’t bring them because I don’t want them here and have to watch them…since you the parent won’t control them either. 

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Fuck these shitty drivers!

What is with these shitty drvers??? They don’t see or simply don’t care about pedestrians, and have damn near run me down on several occasions just walking on the sidewalk  crossing a parking lot entrance/exit. 

Not as dangerous are the assholes who stop or park in crosswalks without the slightest notion they’re blocking pedestrians. I’ve yelled at these assholes numbers of times but with little effect. 

The Pills

The first med I was given was a steroid, Dexamethasone, to reduce swelling of the tumor against the brain, or so I understand. At any rate since starting that weeks ago I have almost no headaches or nausea. Temporarily, I can almost forget I’m doomed, except…I have to take those 4 little white pills three times a day. If I don’t, I suppose withn a day or two my headaches and nausea would return with unpleasant results. 

So I “survive” now not independently like most, but with a thin lifeline to little pills. My current prescription has enough supply for this week and a couple of days into next week. I’m not sure which doctor will renew it, since the original prescription was written in a hospital. 

Waiting for worse

At the moment…calm. I’m taking only a steroid, Dexamethasone, (Decadron) to reduce pressure on the brain from the tumor. And it works. The headaches are rare, the nausea gone.

The only real change I notice is insomnia and imbalance…definitely less confidence walking, so when taking our walks around the neighborhood I remember to take a cane with a seat (mine is even simpler than that one) just in case I need it. I don’t go to work, and my wife does most of the driving from precaution. Otherwise life is…normal.

But it’s not. The tumor is there, growing. Things will not stay the same, they’ll get worse. First with the radiation and chemotherapy and their side effects. Those two treatments will slow, but not stop or eliminate, the inescapable cancer. The treatment side effects will let me know things are not normal and will never be. Then sooner or later, the treatments will have done all they can, we’ll decide to stop them, and let the tumor have its way. Then hospice must control the certain-to-come horrors of the end. How one dies of a brain tumor I don’t know yet but it can’t be good.

So I live these few days, in relative calm and comfort now, knowing it will not remain so for long. It cannot remain so. No matter what I do…treatment or not, do something, do anything, do nothing…my current status is short. Worse awaits.

My Reactions to Others’ Reactions

Continuing my private observations on all aspects of dealing with a sudden, serious event (diagnosed with probably fatal brain cancer).

The most interesting aspect is people’s reaction. My older brother-in-law Manuel noted “people want to participate”, but understandably, they do so on their terms. So for instance, one wants to bring over dinner. Others want to visit. Many offer web links to what they think are helpful sites.

As an aside, one Christian with the same cancer launched into a sort of proselytizing monologue about he immediately thought it was a win for him, because if he died, he’d be with his Jesus, if he lived, remain with his family. Then he realized his wife wasn’t entirely happy with that view. None of it did anything for me; I was hoping for some advice, suggestions for online support groups, etc. He said he’d provide more in a follow up email but so far nothing.

All mean well but few are helpful, and I have to adapt to everybody’s interpretation of what is good for me. That can be tiring if I respond to more than a very few so I brush off or ignore almost all offers.  No one asks what help I could actually use. So for instance, in the case of web links, what they actually do is place another task on my to-do list, were I to follow and study each one. No one offers to do any research in the site they offer.

In that respect it’s the secular equivalent of the Christian statement “I’m praying for you”. It costs the one making the statement just a minute or two of time (to actually say a few words of prayer, or to Google a link or two).  It makes the person feel good for them self almost entirely, not the recipient.

The one truly useful help was my boss and administrative people at work who thought I might be eligible for a kind of disability insurance to extend my work leave, and ultimately get a bit more retirement.  They suggested the possibility first and I thought that was another unwelcome added task. But they didn’t stop there. They investigated, filled out the application as much as possible, and sent me the forms with clear instructions as to what I had to finish and what the doctor had to do. Even left envelopes for us to mail everything back, properly. That might be just their job but it was a big, and unexpected, help. Thanks everybody.