A Series of Unfortunate Events

I am not someone who is narcissistic and posts all my problems on social media, no matter how minor, because, honestly, it's annoying and most people don't care. I have sleep apnea, but so do 1 in 5 Americans. I am a Type 2 diabetic, but there are 30 million other Americans who also suffer from diabetes. However, I am going to talk about my brain tumor, because this is a much more serious, life-threatening, life-changing illness. I don't plan on going anywhere, and I don't go by statistics. God has also communicated (see upcoming posts) and he told me I wasn't going anywhere, because I need to raise my kids, and pass on what I am learning. That is what I am going to do here. Also, writing is an outlet for me, and this will keep me from bothering the wife and kids. Like most people, I will give the bad news first and focus on what has happened to me over the past several months. This all started about the beginning of 2017 (or so I thought). I apologize for the amount of detail.

January: I begin to get headaches won't go away without Advil. I have to take it constantly. I sometimes get dizzy walking around work and usually sit down when I visit people's offices. I jogged during my lunch/exercise break, and vomited when I returned to my office. I thought I overexerted my 260-pound body, and the headaches/dizziness were diabetes symptoms. I visited my primary care physician, and had blood work done. His diagnosis was a Vitamin D deficiency. The one test rejected by insurance was a head CT scan (this is important) and I was told that it would get done if I was in an emergency room, even though it costs the insurance company more (also important).

February: We are moving. It seems a lot harder to lift and move boxes. On move day (2/24), we send our treadmill to Jaci's parents, Fred and Sandy. Both of them see me looking disoriented in the truck and called Jaci. They thought it was my diabetes. I urinate frequently and have had many accidents in the car, especially on snowy days when traffic is slow.

March: Jaci trains for a new job in Pittsburgh, about 3 hours from our home in Centre County, PA. I decide to take a week off from my job at Penn State, go along and sightsee in Pennsylvania's second-largest city.

Thursday 3/16: During the trip, Jaci hands me a pair of pants, and I am motionless, holding the pants. Medical professionals called this a seizure. The boys and I had fun on Mt. Washington looking down on the city, exploring the Carnegie Science Museum (a place as nice as the Franklin Institute for half-price and half the crowds). On Thursday, we venture out to the now-completed Flight 93 Memorial in Shanksville, about a 90-minute drive. It is a bit snowy and cold out. The visitor center is well-presented but nonetheless depressing. You can walk to the crash site, but I decided to drive because of the biting wind and cold. Despite my older son's protests, I drive past a sign that says road closed because I wanted to see the place these heroes died. My son keeps yelling as I keep driving, telling me I am trespassing. I park in the lot as it is being plowed and no one seems to care. We walk over to view the rock marking the impact point of the plane. We then walk back to the car and restrooms. I have another accident, even though the restroom is visible from where I am standing. We drive to return to the hotel in Cranberry Township west of Pittsbutgh. On the PA Turnpike, we get off at the New Stanton service plaza. We use the restroom, get coffee, drinks and snacks. I walk out to the car, and I get dizzy, stumble, and have to brace myself on my car. Two women approach me. I would have taken their picture if I have thought of it. They saw me and the kids in the car. They asked if I was drinking. I said no. They asked me how long my drive was. I said about an hour. They said I would endanger my children by driving. Normally I would tell most people to go away and mind their own business, but I did not argue or protest, and I am not sure why. I then call Jaci. I drive five miles down the road to the next exit, and Jaci's future boss just happens to live in New Stanton. We meet at a Sheetz store. We go to an emergency room. We avoid UPMC because they supposedly had a fight with Highmark, who is my provider, use Allegheny Health Network, and end up at the emergency room at Forbes Hospital in Monroeville, which is the Pittsburgh equivalent to Plymouth Meeting or Conshohocken near Philadelphia. We are guessing we are here for diabetes complications, and nothing more.

In the ER, they take me for a head CT (remember this?). After the CT, the doctor in charge of the ER visits me, and says to all of us, "We found something. It concerns us. We are admitting you to the hospital." At this point, everything becomes a blur to me. We are then admitted to the neurology unit. A neurology PA told us I would need surgery on my brain.

Friday 3/17: Jaci wants to get me to State College or Hershey to get my surgery done closer to home. Some hospitalists at Forbes don't disagree. However, the neurologist performing the surgery strongly advises against leaving Forbes because of the possibility of a grand mal seizure during transport, which could be fatal. Brain resection surgery is scheduled for early Monday morning.

Monday 3/20: My surgery takes place. It is at least a 6-hour procedure. The doctor tells my wife and several people waiting with her that he took out 85-90 percent of the tumor.

Friday 3/24: After a few days of recovery in the ICU and 5th floor, We head home. I remember everything, but I am a little foggy. I thought it was because I was they had me high on morphine in the ICU. We decide to shoot for the Brain Cancer Center at Duke University Hospital because they are the best place in the country to treat this kind of cancer. We hear from Dr. Friedman at Duke, who told us that I had a good, clean surgery, and were willing to consult with me. The consult was scheduled for April 18 (right after Easter). We are very excited to get down there.

March, April, May: Central Pennsylvania is in a seemingly endless pattern of unseasonably cold weather and rain, with highs in the 40s to 60s, and lows in the 20s and 30s. My sutured head had to stay covered. Not a good time to go outside and get fresh air, which is what I need. This should finally break in the middle of May. However, Uncle Biff will be here Memorial Day weekend, and I wouldn't be surprised if there is a foot of snow when he shows up.

Monday 3/27: The neurosurgeon called, and told Jaci that it was a grade-4 glioblastoma (that's as bad as it gets), and most people live 12-18 months after this surgery. My wife told him I am an individual and not a statistic. He agreed and encouraged us to look for clinical trials.

Monday 4/3: We go to our first consultation at Penn State Cancer Center in Hershey, about a 1 1/2 hour drive. The doctor we meet with suggests standard radiation and chemotherapy, and mentions nothing about clinical trials until Jaci mentioned it, and it seemed like an afterthought. It seemed like he knew very little about me or my situation beforehand, and was not prepared. He entered the room with two young, female PAs who had to also examine my eyes and look at my sutures because he couldn't see them and did not have glasses. The PAs removed my sutures. Later on in the visit, a disheveled-looking man almost wanders into the consultation room. My wife thought he was a disoriented patient, and right before she asked him what he was doing, he identified himself as another PA. He then said something about everyone saying how great Johns Hopkins was but was overrated, and left the room. We mentioned Duke to the BSN, and she claimed to agree, but Jaci said her body language was practically shock. The neuro oncologist studied at Duke, but did not want to recommend it. We left there with no intention of coming back because of the doctor's lack of preparation, his suggestion of standard treatment and nothing more.

March, April: I sleep with my CPAP in the hospital and at home. The mask is on the incision, and the parts are not clean. This is my own fault, and I will pay the ultimate price very soon.

Saturday 4/15: The day before Easter, and two days before we leave for North Carolina. We all take a walk so the boys can play at a playground. My wife noticed greenish pus coming from part of my incision, something not seen so far. Despite my loud protests, Jaci and her former supervisor, an RN, decided that we needed to go to the ER at Mount Nittany. The ER doctor popped some more lesions, leaking more pus. As gross as it was, the doctor thought it was superficial and would not be a problem. He called Forbes Hospital, and even though he thought otherwise, the neurosurgery team at Forbes insisted that we go back to Pittsburgh immediately. We weren't even allowed to stop for food, and we haven't eaten since lunch. On the night before Easter, we basically dumped our kids with Jaci's parents and took off. We arrived at Forbes at 11:00 pm, and Jaci understandably wanted to talk to a doctor immediately. She spoke to one on the phone who told her that we are out here because the incision is infected, and a second surgery would be needed to irrigate and disinfect the entire incision, and we would miss our consultation appointment at Duke.

Easter Sunday: Surgery #2. The procedure took about 2 hours. The entire incision from one side to another was irrigated, disinfected and re-stiched. My head was killing me when I came to, but the fog was lifting and I already felt more like myself. We were told that the timetable was pushed back, and radiation and chemo could not start for another 4 weeks.

Monday 4/17 - Thursday 4/20: Hospital stay is, for the most part, horrible. As Jim Gaffigan said, why do they have all these expensive machines that go beep and they can't even get the food right? I am on the ADA recommended 1800 Calorie diet. The worst of the worst is the "Herb Baked Chicken" which was somehow under-cooked and dry at the same time. If I wasn't on a crap-ton of antibiotics and ready to die from hunger, I probably wouldn't have eaten it.

We were in contact with Duke. Our consultation was pushed ahead 10 days to Thursday 4/27. What upset us the most is that we could not participate in a trial concurrent with radiation and chemo at Duke. This devastated us at first until we discovered the upshot. We were going to spend 6 weeks at Duke, and bring the kids with us. Instead, this would enable me to receive chemo and radiation at home. Not only would this save us a bunch of money, but it would allow me to undergo treatment and recover around family and friends.

Back to the hospital recovery. I was hooked up to an IV which pumped antibiotics into me, and could not move without help. I had to use bottles to urinate, making a mess on me and the bed. Despite the fact that a PT and OT insisted that I get out of bed to walk, lazy daytime nurses were not willing to help with anything, leaving my wife to clean, bathe me and make the bed. I barely walked that entire week, making me feel that much worse when I got home.

Friday 4/21: Discharge day. Could not possibly be worse. I underwent a sleep study using an oxygen canula during the week which helped the sleep apnea and was documented. One of the case managers, who was downright rude to my wife, said the oxygen was denied before even sending an appeal to the insurance company. This was not an option, so we contacted our DME provider ourselves and got it done with them directly. Also, I had two blood drains in my head. I felt a new definition of the word agony as a very nice PA (no sarcasm this time) yanked the two sutured drains out of my head and then put four staples into my head when I was fully awake and alert. Finally left mid-afternoon and stumbled in the door early evening. Thanks to not moving and steroids (see upcoming post) I felt like death warmed over. Because the fog had lifted, I remember all this a lot better.

Monday 5/2: The weather fun continues as a severe line of thunderstorms passes through the area. This knocks the power out for more than 24 hours. The kids are home from school, and they are antsy because they can't charge their Kindle Fires. I have to use the car to charge our phones because we are making and receiving many phone calls. We lost everything in the fridge, including several meals prepared by other people, a few pounds of lunchmeat and cheese, two gallons of milk, and a bunch of groceries we bought that day. Rebersburg, where Jaci's parents live and the kids go to school, was hit by an EF1 tornado. Also, because it is cold outside, it gets cold in the house.

Thursday 5/11: My friend Dave is over so we can eat dinner and watch Jeopardy as I prepare for an online test. Once again, the power goes out. This time it's a fire in the area. Still, I go into panic mode and toss all perishables into the outside freezer. I also freeze my insulin, rendering it useless. It should be noted that insulin pens are not cheap. Dave proves yet again to be a great friend as he stays with me until Jaci and the kids get home to make sure I am safe.

Finally, to cap it all off, I can't drive, meaning it is illegal for me to drive because of a seizure risk.

Things have finally been improving over the past few days as I am weening off the steroid, I am better able to move under my own power, and the weather is finally normalizing. I have been fitted for a mask, and should start radiation and chemo within the next couple of weeks.