posted: Feb. 22, 2013 @ 9:56a
PREFACE - Please don't flame me!
First, let me say that I'm completely surprised that I couldn't find an existing thread for these questions. That makes me think that either (1) I'm not very good at searching, or (2) these questions are frowned upon for some reason. I'm trying to limit the details of my situation to what I think would be relevant to the questions at hand, but only to keep things concise and as simple as possible. If more details are needed I am certainly willing to provide them.
DISEASE BACKGROUND - Some high-level details of my illness.
About two weeks ago I was diagnosed with a terminal, inoperable brain tumor. I am going to start radiation and chemotherapy on 02.27.2013. The current treatment plan calls for therapy five days a week for about six weeks - through 04.19.2013. We don't know how terminal the terminal part is, and we really won't until after those six weeks. Worst case is less than a year. Median is one to two years. I've got potential to be a fairly optimistic case - some folks are still going strong after eight to ten years.
FINANCIAL BACKGROUND - High-level details of our current financial situation
OTHER STUFF - We've had a fairly eventful financial past, and this info may or may not be helpful.
PRIMARY QUESTIONS - These are my primary questions, but I'm sure I may be missing some important ones that I don't even know to ask.
CONCLUSION - I have no subtitle for this.
I'm not trying to milk this situation. That being said, the safety and security of my family is incredibly important. If there are any saavy or calculated [legal] moves that I can make that will help make my family more secure I'm all for it. We have always tried to follow whatever "Golden Rule" we can with our financial dealings - for example, we could have squatted at our first home for quite a long time, but we felt that we did was the "right" thing to do, in ethical terms. We'd like to stay as ethical as possible, but where ethics become murky, but the law is still clear, we'd err on the side of protecting the family.
I should have mentioned it originally - my wife and I are currently in the process now of updating our wills, preparing our living wills, making arrangements for guardianship of our kids, etc.
Thank you everyone for your input so far - this is all really and truly helpful.
I'll update the OP, but I'll add it here since it's been the topic of many replies - I just created account over at the SSA website and checked my benefits status. I also ran through the online calculator using my old tax records and got a fairly similar result.
Survivor Benefits - Child: $1,492
Survivor Benefits - Spouse: $1,492
Total Maximum Family Benefits: $3,481
While it would certainly be a thorny subject, we do have a very good relationship with my son's bio-dad (as I call him). The child survivor benefit is greater than the child support payment, so it would normally be advantageous to my wife. That family maximum makes it a moot point, however. She'll max out her benefits before his benefit would be considered.
I don't know what makes that max benefit change over time, but from the light reading I did it doesn't sound like it would move too significantly in the near future.
Many of you have asked - I'm 30 years-old.
Also - wow - I've got to say again how truly touched my wife I are with the show of support. I expected (and hoped) to get some cold, calculated advice from the FWF crowd - and I did. But we've been really touched by the abundant and vocal support that everyone has shown. I'm going to keep responding to questions/comments. I'll also keep updating our progress. Although I hope no one will need to reference this post, hopefully it will help someone if they do.
I'll update the OP as well, but I'll list it here as well...
We're Treating With
UVA Health System / Dr. Schiff
We've Consulted (and Vetted)
Duke / Dr. Friedman
I'm 30 years-old. I don't have a glioblastoma - I've heard that's both a blessing and a curse. I have a diffuse brain stem glioma, focused in the medulla. We're not sure whether it is a low-grade or a high-grade glioma because a biopsy is really not a viable option for me.
I also posted this in the thread, but adding it here as well:
Hello all - long overdue update post here. I've been a crap communicator the last several weeks, mostly because I'm just so darn exhausted.
I researched clinical trials as best I could. I couldn't find anything for my specific diagnoses - again, it's pretty unheard of in adults - but I did consult with my Neuro-Oncologist who said that, based on that rarity, in his experience treating reasonably now wouldn't necessarily bar me from a clinical trial down the road several years if one opens up. He said that any clinical trial that deals with my specific diagnosis wouldn't be able to get any participants if it excluded folks who had completed their "best guess" for treatment. That may be BS, but given that there aren't any current trials it sounded good to me.
I also looked in to the Ketogenic (spelling?) diet. We consulted with a few doctors and nutritionists. We learned that itís a very difficult diet to get right, and that itís an all-or-nothing affair. We were also warned of some long-term side effects or pursuing the diet. Ultimately we decided to eat bacon and be happy.
My therapy regimen calls for six weeks of radiation treatment, five days a week (Monday through Friday) along with nightly doses of chemo every night (including weekends). Iíve got seven days of radiation left, and therefore nine days of chemo with it. I must say that I feel very lucky to be weathering this face of treatment as well as I am. I get completely exhausted around 5:00PM or so (it was initially not until 9:00PM or 10:00PM), and I can definitely feel the radiation starting to catch up with me physically (tooth sensitivity and the like), but Ė Iím still working [from home] full-time, able to get my treatment sessions in during my lunch break, and able to put my four kids to bed each night. From what Iíve heard and read it could be a lot worse right now.
Weíll follow-up with my Neuro-Oncologist again three weeks after the completion of my treatment (with the final day being next Thursday, April 11th). At that point theyíll do a repeat MRI and see where I am and where I might be down the road. Still being realistic, planning and preparing for the worst, and hoping for the best.
Weíve got our updated wills and living wills, etc. underway through our attorney. Weíll be investigating putting as much in to trust(s) as possible Ė Iíll admit I donít know a whole lot about that bit of planning, but I do know enough to know that Iíll be looking in to it.
I did take the suggestion of another poster and more pro-actively work towards setting up a passive revenue stream for our family for the time when I am unable to work, or no longer living to work. I set up an LLC with my wife as the sole owner and registered that business with the Apple, Android, Windows Phone and Windows 8 App stores. Nothing release yet, but Iím on track to crank out a good 20 or so apps within the next week or two. My target scenario is free ad-supported apps that someone will keep on their phone and open from time to time. Iíve done some preliminary math through several of the ad platforms and even a conservative number of downloads/views, without even many click-throughs, would provide meaningful income for my family.
There are other items that have been surfaced in this thread that I still plan to look in to Ė insurance strategies, timeshare strategies. To be honest, Iíve been trying to get some of these core items tackled the last several weeks. That, combined with the fact that Iím trying to keep family time as a major focus, and how tired Iíve been getting, has made it difficult to get as much stuff checked off as Iíd like. Iím optimistic that once my treatment takes a break Iíll have a bit more energy to tackle these other questions. Hopefully Iíve picked wisely what I focus on at the present time.