Hi Tray. Thanks for taking the time to do this. Why don’t you go ahead and tell us a bit about yourself?
I’m in my late 20’s and I live in Louisiana.
Around Thanksgiving I started getting some headaches which I chalked up to seasonal allergy and sinus issues. When they persisted, I went to an ENT to see if I had a sinus infection. I did have a bad infection, so she gave me a steroid shot and 10 days of antibiotics. I felt really great for a few days. It turns out the steroid was most likely reducing the swelling of my later diagnosed brain tumor.
The last straw was on the Saturday before this past Christmas, at a wedding reception for a close friend. I only had two beers and went to bed early because my head was pounding. Then, in the middle of the night, the headaches got worse than they ever were. I was dizzy and losing my balance, and very nauseous. I made my way to the couch somehow and if I even moved so much as in inch, I would vomit.
When I finally got to the hospital they did a CT scan which showed that my sinus cavities were fine, but there was a mass on the back part of my brain. They followed up with an MRI, and the neurosurgeon determined it to be a meningioma. These are typically benign tumors that are slow growing so you don’t typically see them in people as young as me, though it does occur. Treatment is to fully remove the tumor via craniotomy and as long as it is in fact benign you just have to keep monitoring over time to ensure that another one doesn’t develop. So we scheduled the surgery for the Tuesday after Christmas.
With that, they put me on steroids which immediately reduced the swelling around the tumor and allowed me live a symptom free life leading up to surgery. I was able to enjoy the holidays with my family as best I could and the kids truly had a great Christmas.
The surgery went well and they were able to fully remove the tumor. Unfortunately, however, it was not the benign meningioma they thought it was. Instead it was a malignant medulloblastoma, which is a mostly pediatric tumor and rare for someone of my age. Each year in the U.S. there are only about 200 cases of these tumors in adults over the age of 20, so that gives you an idea of exactly how rare this is. I spent two days in the ICU at the hospital and then went home. That amazing part is that 3 days after my skull had been opened and a tumor cut away from my brain, I stopped taking medication and I was walking around and started working from my laptop. Modern medical treatments are truly amazing.
The following week I met with a radiation oncologist for a consult. His opinion was that I needed to go to MD Anderson in Houston (which luckily is only 3.5 hours drive away). Because of my young age and the rarity of my diagnosis he thought that it would be best for me to be with specialists who have dealt with this treatment before. So we spent this past week in Houston with the MD Anderson team. I have been nothing but impressed with them and it’s reassuring that they have treated hundreds of patients with my almost exact situation.
So the plan is: radiation to the head and spine for six weeks, one month of recovery, and then six months of chemotherapy. The radiation will be MD Anderson’s proton therapy which is a more precise delivery of radiation. Given my young age the proton therapy will hopefully result in fewer long term radiation effects. Pretty awesome stuff, you can read more about it here.
I understand you have 2 young kids. What have you been able to share with them about your diagnosis? How much do they understand?
I don’t think they understand much. My daughter is a year and a half so she is particularly oblivious, but my son who will be 4 next month has picked up on it a little. I just explained to him that Daddy has a spot on his head the doctor needed to take it off and that I need to go to the doctor a few more times to make sure everything is okay. He has had a little trouble with us having to be away for multiple nights without him, but most of that should be behind us. My wife is a teacher and has pretty good benefits. She can take off for the duration of the next 6 weeks at 65% of her pay so that’s what we chose to do to be around the kids as much as possible.
When I first came home from the surgery my son remarked at the staples in my head, “Daddy, you’re so silly. Staples are for paper!”. So now I guess we should keep the stapler away from him or he is liable to staple his or his sister’s head!
It’s only been a few weeks since your diagnosis but you seem to be taking it in stride as much as could be expected. How is your family holding up?
All in all, I think they are doing pretty well. The more positive I can stay about it, the more positive they stay about it. I have a large, close knit family and they’ve been an incredible support.
As I think back on my circumstances, I’m reminded that I’ve witnessed the loss of a parent, aunts and uncles, almost all of my grandparents, and I’ve been diagnosed with a brain tumor at the ripe ole age of 28.
But it’s important to keep my perspective. None of it seems unfair to me; I feel like I won the life lottery. I was born to a large, loving family in what is statistically the wealthiest country in the world. I’ve been with the love of my life for greater than half my life and I’ve watched her mother our two unbelievable kids. It would seem disrespectful to not consider myself extremely lucky.
Tell us a bit more about the community support you’ve received and what it means to you.
Immediately after the diagnosis, one of our really good friends, unprompted, set up a Gofudme account and mealtrain account. So far we have received enough food so that we probably don’t have to cook for the 6 weeks of radiation. The gofundme has raised over $10k and we have received several monetary donations outside of the gofundme account. For instance, the CPA firm that I first started out with almost a decade ago, sent me a card with $250. The gestures have been unbelievable and literally bring me tears each time.
Not to mention the letters, notes, and messages of prayers and encouragement. And work has been extremely flexible with me. I can do almost anything I need to do from my laptop so I just work around the schedule and get what I need to get done.
What is your prognosis?
This is a tough one. Because the rarity of my disease there isn’t well defined prognosis factors developed. They currently split the disease into two groups: standard risk and high risk. I am in the standard risk group so I have a better chance than most to get to remission. Because of the low number of people affected by this disease they also can’t give great stats on survival, and can only look with hindsight. In the largest study ever done on my disease (400 patients dating back to 1975), median survival was a little over 10 years. But modern medicine has made some strides and we should see that stat grow over time.
How much of a role did your financial security play in comforting your family in this difficult time?
It certainly helped. It gives me peace of mind that we have at least gotten to a point where my wife can keep her normal life should anything happen. Having to worry less about that allows me to solely focus on recovery.
How long have you been striving for financial independence, and what were your original FI goals?
I’ve only discovered “FI” about 2 years ago, but I’ve always lived a life compatible with the idea. When I started working at the local CPA firm at 19 I opened a 401k and started contributing and saving a little money each month. I always wanted to retire or semi-retire early. When I stumbled across the FI community it just seemed like people echoing my own thoughts and was a natural fit.
Has your diagnosis changed your FI goals at all? Your general outlook on life?
This is a good question and I am not sure I fully know yet. I feel like I have always been pretty good at balancing the desire to save as much as possible with the desire to enjoy my life now. We typically take 2 vacations a year: one to the beach with my whole mom’s side of the family (last year we had 50!) and then some sort of mini-family vacation with just my wife and kids. I will probably keep that approach, skipping this year due to treatments. But I feel like I will also try and have more experiences with my wife and kids, given the potential for a shortened life. Some of these may not cost any money. Maybe I’ll try to work more at night or early morning during my busy work stints in order to devote more time during the day to my kids. Maybe we’ll go to Disneyworld sooner or more often than if I hadn’t gotten the diagnosis.
But I have to balance those desires with my family’s finances because I want to make sure they are taken care of if I am no longer with them. I am expecting a fairly large raise this year as a result of a promotion. The most realistic scenario is that while I had reserved all of that increase in pay to savings, I will probably divert a small % of that to the “fun bank”.
For us Canadians, can you explain a bit how your health insurance worked? So you had coverage through your employer?
We have family coverage through my wife’s work since her insurance plan is better value than my employer’s plan. She is a teacher so her plan is through the municipal government and has great benefits. I have an $800 deductible and then after that I pay 40% of medical bills until they reach my annual out-of-pocket max which is $5,000. I should reach my out-of-pocket for two years since the treatments straddle the year end. So that puts the medical bills at around $10,000. Including traveling expenses and everything else, I think total cost to us is going to run around $20k.
We had to fight for proton therapy, but it is being covered by the insurance now after initially being denied and going through 3 appeals. Proton therapy is about 4 times more expensive than traditional radiation (approx 50K) so my insurance company only deems it “medically necessary” under certain circumstances. One of those circumstances is for the treatment of a pediatric central nervous system tumor, which is what I have. But I am not a pediatric patient so it was a struggle to get covered. I also have ongoing monitoring which I would expect will lead to higher medical costs over the rest of my life.
Tray, thanks for the interview. My readers and I wish you all the best.
Tray was adamant that any donations readers want to make go towards funding Dr. Anderson’s research in proton therapy.