Having cancer

Hugs to everyone again. Here is sort of the final update I’ll most likely have short of Jesus Christ hand delivering a cure. It is the standard I have given to many folks so excuse the impersonal copy and paste.

OK. Rebecca had more scans of the rest of her today and we met with her
doctor. Below is my best summary of my understanding and the next step
for her treatment. I may have some minor details wrong, but the general
info is correct. I am happy to answer any questions and we are all doing
ok considering.

The Spasms in Rebecca’s foot were little
seizures from the metastasized cancer causing pressure in her brain. The
MRI showed Multi-focal spots meaning many. The cancer in her lungs and
abdomen has also progressed. They are ceasing the chemotherapy she is
on. We will meet with the radiation oncologist and Then 7-10 days of
radiation on her brain. That may include gamma knife radiation which can
target individual spots or more broad radiation therapy on her whole
brain depending on the number of lesions and the doctor’s determination
of best efficacy. Then, back to once a week chemotherapy infusions on a
new combination of chemo drugs. No more driving for Rebecca due to the
possibility of seizures while in the car. So That’s the next steps. The
cancer and the treatments May start affecting her speech, memory and
demeanor so being open and honest with Ellen and Alison was necessary
where we had kind of held back somewhat on the severity until now.
There ya go. We love you all and the whole family has felt your love
and support throughout this ordeal and especially recently. Bec may need
rides. She WILL need people to get her out of the house for a sanity
lunch or drive or movie. Luckily, Alison is learning to drive so some
slack can be picked up in house with Bec along for the ride.

That’s it. I’m tired. Peace out.

Much love and hugs to you and your family, Tyler.

Tyler, that’s absolutely horrific. I’m so sorry you’re all going through this.

That’s a well-written note though, even if it did cause my monitor to fuzz out for a few minutes.

I am really sorry to hear about this, Tyjenks. Best wishes to you and your family.

All the best of luck to you and to her, and your family.

Just as a (hopefully) hopeful note: years ago I had a friend who was very close to hospice with intestinal cancer. Miracle of miracles, the doctor got her into a trial with the drug that ended up being Gleevec. She is still alive today, three kids, happy life.

I wish all the stories ended that way.

Tyler, I’m so sorry for you and your family. We’ll give you as much emotional support as we can. In the meantime, please hang in there!

Unfortunately, the fact that there is metastasized cancer in her brain stemming from breast cancer means she is eliminated from any breast cancer treatment trials now. Sometimes I hesitate to reply when people bring up other cases that are positive and meant to be helpful because I sound like “Woe is me”, but I have determined that the information I can convey to people would be more helpful.

For example, a coworker shared the story of a friend who had brain cancer. A blastiatoma (that’s not right, but I can’t remember and don’t want to google it) that was cured and the person is in full remission. I let that one slide, but a tumor in the brain and breast cancer that has metastasized to the brain are completely different. Different treatments and different prognoses. Just like the cancer in her liver. People told me stories of removal of 90% of their acquaintances liver who had liver cancer, the organ grew back (as livers do that!) and all was well. Removing breast cancer in the liver is not even an option as it doesn’t actually stop the spread in any meaningful way and can actually cause more disruption with the cancer cells and cause it to spread…if I am remembering that correctly. Removing any of the tumors in metastasized breast cancer isn’t an option. All you can do is manage progression and try to balance that with quality of life.

Again, I hope no one takes this the wrong way as I sincerely appreciate all the well wishes and hopeful stories including yours @BennyProfane. The gamma knife has shown great results in targeting brain cancers and my wife’s treatment could very well produce wonderful results. If anything comes out of this whole shitshow, it is that I would like people to better understand what happens with various types of cancer with which I have become all too familiar so if it happens to someone they know, they may be slightly better equipped to help them.

The warmest of hugs to you and yours, Tyler.

-Andrew

I’m so sorry. All my love to y’all. Don’t ever blame yourself for anything.

Tyler, hang in there man. That’s terrible news, but I don’t see it being “Woe is me.” It’s just the way it is. I think it makes a lot of sense to be honest and articulate about the options available to you. Good luck.

Well, also, I feel the weight of it when telling people. When they know something has been going on and then their faces when I tell them the latest. They don’t mean it. I think there were episodes of friends and Seinfeld that covered it. The intake of breath and head tilt. Sometimes I apologize as I know there is nothing to say and I have dumped this information on them. It’s not quite as bad here as I do not have to see all of your faces. Then people offer thoughts and prayers and stories of encouragement and I never want to correct them. First, about the stories as I know they see a string of something that might help so they pull it into the conversation. If I say"That won’t really work in her case" is just punching them in the gut with the information a second time. And I really do appreciate the effort! Second, and I’m being frank with you all because everything kinda sucks, I appreciate the thoughts and prayers. I take them as the kind support in which they are given. I definitely pass them onto my wife. That said, prayers have become worthless for me. I think I covered this ground previously, but a large group of people in churches of multiple faiths have been praying since this all started 18 months ago. A co-worker’s sister works at the Vatican! They are praying for various things people pray for. Comfort, piece of mind, those that believe that God is a divine physician pray that his healing hands will take her in. At each stop there have been no tangible, positive results. I long ago stopped believing fixes things and I am pretty sure he does not intervene. All that, is simply my view. The rest of the family is “lifted up” or whatever and I do feel the support of people although I see the value of prayer cynically.

What I do not like is the people who continue to say that you can’t give up on a miracle. Even after Friday’s brain scan results, I emailed my group I work with of about 12 and said “There ya go. It all sucks and there are no miracles”. My boss replied with “I’m sorry, but Don’t give on on miracles”. Has someone experienced a miracle that you know? I know people that have all but been cured of cancer as a result of medical research. I know people that have fallen off buildings and not died. INDY Car drivers survive those crashes in those tiny little shells. None of those are miracles and giving me false hope about things being OK is lame. And where the fuck were the miracles during the diagnosis 10 years ago or the re-diagnosis or prior to each set scans?! Things are not always OK and at 40, 50, 60 years old, people should have learned that by now. I told my then 9 year old that things might not be OK last year, but we are doing all that we can. That’s it. False hope means the gap of acceptance when things turn to shit is huge and can break you. People call me cynical and pessimistic about religion and my outlook. The thing is our society and religion whether intentional or not, makes us feel as if we can do anything and fix anything. There is a distinct lack of reason, logic and pragmatism in this country.

Well, that went off the rails. My kids need dinner.

Thanks to all of you and to @tomchick for this space to vent. Much of my speeches do not go over well in the Southeast United States believe it o not.

We’re here and listening. No judgments, and you can’t dump too much on us. Share as much as is helpful, and know that it’s been heard.

I’ll admit that I really wish there was something more I could do than just listen (or read, this being a message board) for every one of the people in every one of these stories. But if listening is what I’m able to do, then I’m all over it.

Well, Tyler, I applaud you for your honest response and realistic understanding of the inevitable. Death is very hard to accept but it most certainly will happen. The key is to live in the moment and be your best self for your wife and your family right now. It is the only moment that is fully in your control. Much love to you, man.

Hey, I get it. I got it when 7 years ago my grandmother got brain cancer while they were in Florida for the winter. I got it when I flew to Tampa to visit her in the hospital to discover it was stage 4 brain cancer, and not the stroke we all thought. I got it when, a few weeks later, she lost the ability to speak, and then a week later died. I got it when, for that excruciating month, all the people from their church, my families church all showed up and said we’re praying for you as if that made it better and part of me wanted to yell at them ‘fuck off, because it isn’t working’. I get it because I had to bite my tongue there as I know that they weren’t doing it out of malice, but that they thought this was being helpful. That their prayers had some meaning other than easing their own fears and concience.

I get it because I’ve never really articulated that to anyone before. Even in Chicago my family and social circles are too far tied to the sincere belief that prayer has any meaning or value in these situations.

So I hope that you continue to use this space to vent, to share, to do all the things you need. To say what you can’t to your family. And I feel for you, this sucks. Seeing how that tumor changed my grandmother was gutting, and I can not fathom how it feels that this is your wife, that you face a certain dread knowledge. To go through this with young kids… I can not fathom what you are, and will, experience. You have my deepest empathies. I have a son, and a daughter on the way, and the thought of raising them alone would crush me. But preparing them now, I have great respect for that, as shitty as it is.

And next time you need to rage at the world and the irrational ‘I’m praying for you’ that feels like a slap in the face at times, we’re here for you. This sucks.

@Tyjenks, if you go back awhile in this thread (April-December 2015) you can see that I dealt with my father having primary brain cancer. Not the same cause, but the same treatments. Let me know if you need any support or want to talk about the details of any of his experiences and what the family went through. He had the worst type of brain cancer, and didn’t make it, but I wanted to offer any support I can provide by being tangentially familiar with the situation. Good luck to you guys.

I’m also familiar with the prayers and miracle talk and have grown extremely cynical about it. My dad’s finacee is still having immense trouble with his death 10 months later, and I think a lot of it is because she let herself believe a miracle was going to happen - even up until the last day.

Well said.

Yeah, I can see how that would be hard. It shows that you’re a thoughtful, generous guy, but that’s probably not an advantageous position in the situation you’re in right now. I mean, it’s advantageous for your wife and your kids, I’m sure. It’s also good for the people in your life trying to show up and lend support, but it’s going to be hard on you, and you’ve already got things pretty hard right now. Hang in there, Tyler. Don’t beat yourself up too much. And good luck.

Good luck Tyler.

I’ve got nothing to add other than you’ve got another person thinking of your family, hoping for the best, and here to listen (read) whatever you have to put out here.

Here’s a good story about a game developer with cancer.

I suggest this blog post, which was written a year earlier: