So, yes, I am officially a PWC. Person With Cancer. The tumor that was removed from my brain is called a glioblastoma, a grade 4 tumor. It's the most aggressive form of malignant brain tumor.
More on that later. For now, let's step back in time in case you haven't been keeping up on social media with my medical odyssey. And this is going to be long, because it's the first time I've set down everything that's gone on in the last three months. If you reeeealllly need to just get to the cancer detail, click on this "after the jump" link.
I sat down and started eating dinner on April 8th when I noticed the left side of my face becoming numb, followed by spasms or twitches in the same area. I called my brother Andy to ask him to take me to the emergency room, and as soon as I hung up with him the spasming stopped and the feeling returned to my face. The whole thing lasted maybe five minutes. Thinking it was perhaps a food allergy, I didn't go to the ER that night. I saw my primary care doctor the next day. He said it was probably a transient ischemic attack, commonly called a mini-stroke, and told me I needed to see a neurologist. Late that afternoon, I woke from a nap and it happened again. It didn't last as long but I knew I had to go to the hospital. Of course, being me, I took the bus (SEPTA route 84 to Aria Torresdale).
I was admitted and an MRI was done the next day. The diagnosis was that I had a small stroke. I was put on aspirin and plavix, a blood thinner. In addition, I was diagnosed with Type 2 diabetes. So that meant two more prescriptions (glipizide and metformin) as well as checking my blood sugar daily and changing my diet to limit my intake of carbohydrates (which converts into sugar in the body), and they put me on lipitor for my cholesterol (which I have never before been told was a problem). Adding to the synthroid I've been taking for a couple of years now (underactive thyroid), that makes six different medications daily.
(A diabetes note: I'm not 100 percent convinced I have it, or at least that I need that much medication. I feel like the numbers on the A1C test, which gives a record of your blood sugar over the last 6 months, were unusually high because at the end of December I went back to work at LIHEAP and, with the travel time on SEPTA being so long, my eating habits became much worse than they already were. I'm having follow-up blood work done next week and then seeing my primary doctor, so we'll see how it stands.)
The spasms in my face continued on a daily basis, even multiple times daily, at varying intensity but always brief. The doctors felt it might be muscular in nature but saw no other reason to keep me in the hospital. So I was released after a three-day stay. For the next two weeks they would ebb and flow, sometimes seeming like they were fading away entirely until a stronger one would hit. On April 25, a Saturday, I had an episode about noonish, and then a second, stronger one while I was out having lunch and shopping. At around 5:30 it happened again, but even stronger, and at first it didn't seem like it was going to stop. I got really scared and called 911. The operator had trouble understanding me because the spasms affected my voice. I was telling her "I think I'm having a stroke" and she had no clue. I tried yelling "STROKE! STROKE!" but it sounded like Scooby-Doo was saying "ROKE! ROKE!" She connected to (I think) the dispatcher and, as they were sending an ambulance, the spasms finally stopped and I was able to be understood again. As soon as they hung up, the ambulance arrived.
The neurologist who saw me in the ER was not there in person but via video feed. (Gotta love the health system where one specialist has to cover multiple hospitals from a camera.) He said the spasms were actually focal seizures, seizures in one specific area as compared to grand mal seizures than someone with epilepsy has, and that they can occur when someone's had a stroke. This time I was released the next day and put on keppra, an anti-seizure med. (Medication list increased to seven items; in my most recent hospitalization they put me on blood pressure medication but now I'm off the plavix and aspirin for good so we're back down to six.)
On May 19th I had an outpatient visit with a neurologist, who doubled my keppra dose because the focal seizures hadn't really been affected by the initial, more mild dose. I was scheduled for a followup in early July. After a while, the spasms in my face were not as strong, and not happening as often, and some days didn't happen at all. It seemed like things were going well. My speech still sounded a little funny, though, and then things got worse as we got into the middle of June.
My left hand became weak and I had a sensation of lost feeling in my fingers. I couldn't hold on to things, especially small items such as keys. Every time I was going into my house, I'd have trouble grabbing the keys out of my left pants pocket, and then holding them once I did get them out. Turning doorknobs or water faucets or lids on bottles with my left hand got more and more difficult. My speech seemed to get worse. I lost the ability to type. I constantly hit the wrong keys with my left hand. Using my cell phone, awkward enough to begin with because of its size (Samsung Galaxy Note 4), became a problem. I had trouble holding it with my left hand while tapping the screen with my finger on my right hand, and when trying to grip it more securely my thumb and forefingers on the left hand moved to the screen and inadvertently hit icons, and generally interfered with whatever I was trying to do. Or if I was on a phone call, my arm would slip and the phone would move away from my face.
On Tuesday, June 16, I called the outpatient neurologist and asked if I could move up my scheduled July appointment. By some miracle, they had an opening the next day. That afternoon I tried filling out a form (in the old-fashioned way, with a pen). I was constantly misspelling words, reversing letters and making a general mess of the form. I went to the neurologist the next day and he said I probably had another stroke. He wrote out instructions on his prescription pad for me to get an outpatient MRI and to start physical therapy with Moss Rehabilitation Center, but because they thought I might need a referral from my health insurance company, I had to go home and wait first. Walking to and from the office, bus stops and my house, I noticed my left foot was dragging. I wasn't taking full steps the way I was with my right foot. I got home and fell asleep in front of the TV. When I woke up, I saw that I had a voicemail. It was the neurologist's office, saying that they didn't need prior approval from my insurance and asking me to call and get the phone numbers to schedule the outpatient MRI and rehab. I had trouble even placing the call -- hit the wrong buttons and even dialed a wrong number once. When I did dial correctly, the office was closed for the day.
I knew I couldn't wait. I was getting worse and who knows how soon that MRI could've been scheduled? I called my brother and went back to the ER.
The hospital protocols, for some reason, do not allow for MRIs to be done for people in the emergency room. You have to be admitted first. So they did a CAT scan, and once they saw that result I was admitted to the Neuro ICU. (This meant I was constantly hooked up to a heart monitor that wasn't portable and a blood pressure cuff that recorded my BP hourly, as well as regular checks of my temperature and blood sugar. Sleep was very difficult at first, although it got a little easier each night. Every time I needed to use the bathroom I had to let the nurse know so they could unhook me. That was a pain, but the worst was yet to come. I had great nursing care up until the last night.) The MRI the next day confirmed that I indeed had a tumor that had to be removed and there was edema, or swelling. But first I was put on a steroid, administered through the IV line, to reduce the swelling, and taken off the aspirin/blood thinner meds for 5 days before the surgery.
This diagnosis actually made me very, very happy. A stroke? Going through therapy to try and function and "re-learn how to do things" and whatever would be awful, time-consuming, frustrating. A tumor (cancerous or not) causing all my issues? Cut it out and I'll get back to normal? Awesome! I was already noticing improvement just from the steroids reducing the swelling.
On Monday, June 22, the afternoon of my 5th full day in the hospital (and the 6th anniversary of the establishment of this blog, although with the lack of posts recently...), after doing another MRI to create a detailed "map" of the area of my brain where the surgery would be done, I was whisked off to surgery. Various people were introducing themselves and explaining why they were there, and the anesthesiologist then took over. I went out rather quickly. I remember a moment where I was dreaming. It was nothing memorable, just some conversation, but it seemed pleasant enough.
A moment later there were bright lights and everyone screaming at me almost simultaneously. "JOE! SQUEEZE MY FINGERS! JOE! RAISE YOUR LEFT LEG! JOE! LOOK UP! LOOK DOWN!" and so on. And then I was whisked back to my room in the Neuro ICU. And I had a very uncomfortable sensation in my groin. As it turned out, while I was under they removed my shorts and underwear and inserted a catheter, which stayed in place all night. That night was very difficult. The next day the catheter was removed and I was allowed to eat again, and I was feeling better immediately. The followup MRI looked excellent. The neurosurgeon removed virtually all of the tumor. I was told based on the type and location that it was likely cancerous but it would have to be confirmed by the pathology report. But I could tell immediately that my brain was starting to fully function properly. I was able to hold things in my left hand longer -- even my phone. I could walk without my left foot dragging. I sounded more coherent. I could write words and spell them correctly.
So, if you've ever been hospitalized you know that besides the nurses, doctors are in and out almost constantly. I'm pretty sure some of these visits have no purpose but to get their names on the record so they get a cut of the amount being billed. Anyway, the following day (Wed. June 24), the entire morning and into the early afternoon, no one had come in except for a speech pathologist. She watched me eat and drink, and administered various tests -- word puzzles, brain teasers, memory stuff, then had me write down my name and address and write out a phony check -- to verify that my brain was working. It was, and still is (all you wiseasses can just shut up now). A little after two that day a neurosurgeon came in and examined me, and upon hearing of the speech pathologist's assessment, said that they just needed someone from physical therapy to watch me walk up and down steps, and once I passed that test they could move me to a regular room or even send me home. I was thrilled!
Except no one from physical therapy ever showed. I figured one more night wouldn't kill me. Just after 8 pm the nurse assigned to my room for that night came in and told me that because more patients were coming in and they needed the room, they would be moving me to the "step-down unit." I asked what that was. She said I would only need the blood pressure checked every two hours and they would put me on a portable heart monitor, so I could get up to use the bathroom. I asked if it was still a private room (like every room I was in during my three hospitalizations) and she said she wasn't sure, but I could sort of tell it wasn't. I told her I had the possibility of going home but the physical therapist didn't show, and that if I was not comfortable in this step-down unit that I was leaving, against medical advice if necessary. (Around this time my brother Tony texted me that he was on the way over to visit and I told him he might get to take me home.)
The nurse disappeared for a while. Finally she and an orderly returned to wheel me to the step-down unit, a short way down the hall. It was a larger room which could hold two beds, with curtains for privacy and a shared bathroom. The other side of the room was empty, so I decided it was okay. Five minutes later they wheeled someone else into the other side.
He wasn't a problem, although he got chatty with every nurse or aide who came to see him. He was in a bad auto accident and hadn't really gotten out of bed yet. But in the unit across the hall were two men. One moaned in pain and called out for help or for his mother or for others constantly, while the other begged and pleaded for him to shut up. This went on ALL. DAMN. NIGHT. Between that and the nurse's aide coming in to check my vitals I could not fall asleep. I became more and more annoyed and even listening to music on my phone (with headphones) did not help.
Note above that I said "nurse's aide." I had a nurse assigned to me but other than when I first got into that unit, the idiot only came to see me twice. The first time was at 4:30 am. Just when I finally started drifting off into what might have been an hour or two of sleep, I was startled back into consciousness as she stood at the foot of my bed. "I noticed that they wrote down for you to use these compression wraps on your legs for your circulation." (I had these in the other room. They're plugged into a unit that compresses and decompresses them regularly to keep your blood flowing. They didn't move them with me to this unit.) She continued: "We could put them on you for the night and during the day--"
"I will NOT be here during the day. I am getting out in the morning no matter what it takes."
"Oh...um, well, they also wrote down that you could wear compression stockings, which go on your legs--"
"I don't need those. The wraps will be fine."
She left -- and never brought back the wraps or the stockings! She interrupted my final, desperate attempt at sleep for nothing! She did return one more time, before her shift ended, with some paper. "I brought you some information on synthroid." Why she picked that, and not any of the other meds, including those they put me on just since June 17th, I have no idea.
"I've been on synthroid for years. I don't need that."
"Oh...well, it's just because of the government."
"Oh...well, it's just because of the government."
At this point I wanted to completely explode, and perhaps throw her out a window. Somehow I managed to stay composed and told her "just leave it if you have to." She did, and I never saw her again. I used one page as a bookmark for the "Afterlife with Archie" graphic novel I read later in the morning, and left the rest behind.
Finally, the day nurse came in for the first time and before she could do anything other than introduce herself I immediately began my controlled rant (not these exact words, but close): "I could have possibly been sent home yesterday except no one from physical therapy showed up, and then I was moved into this unit where the man across the hall moaned all night and the other man kept telling him to shut up, and I did not get ONE SINGLE OUNCE OF SLEEP all night." (I may have mentioned the other nurse being a moron. I'm not sure.) "So this is what's going to happen: I'm going to eat breakfast and get cleaned up. Then the physical therapist will come and see me walk on the steps, and then the doctors will discharge me and you'll take all this stuff (heart monitor leads, IV lines) off and I will leave. This will all happen by noon or I will walk out and you will not stop me. This is not up for discussion or debate. I am leaving by noon."
They got the message and I was out by noon.
So in the last week and a half I've gotten stronger and stronger. My hand is nearly fully functional. (Just look as all this typing!) I am very close to 100 percent back to normal. My speech still sounds a little off, but I certainly can be clearly understood, and there may be a little droop remaining on the left side of my face but that's it.
Which brings us, finally, to the cancer, about which I got plenty of detail today from my appointments with the neurosurgeon's office and a radiation oncologist. (If you've skipped down here, welcome back.)
The glioblastoma is the type of tumor that develops from cancer cells in the brain. It doesn't spread to the brain from another part of the body and it doesn't spread from the brain to any other part of the body. (In the hospital they did an MRI, or a CAT scan, or something, to verify that there were no other tumors anywhere else in my body.) On average people with glioblastoma live about two years, but every case is different. The fact that the neurosurgeon removed nearly all of the tumor is a point in my favor. I'm not going to dwell on some "Oh, I have x months to live" thing...unless it can get me some free swag, like luxury suite tickets to games or meeting celebrities or something.
Since it's an aggressive form of cancer the treatment is pretty aggressive as well. I'm going to have radiation treatments every day Monday-Friday for six weeks, starting the week after next; next week they do a "mapping" to target the exact area they'll zap me. In addition, I'll have chemo, but that will be administered by pill (and will continue for a period beyond when the radiation is over with). In September I'll have a new MRI done (and then at regular intervals after that) and follow up with the neurosurgeon to see how things look. Hopefully there will be no sign of new tumors growing.
I've been told that side effects from the chemo should be minimal, but there may be some from the radiation that show up after about 3 weeks -- hair loss, nausea/vomiting, fatigue -- but clear up after radiation ends. There's also the chance of some short-term memory loss that would not go away after finishing treatments. That's a little worrisome but...but...what was I talking about again?
What really sucks about this (besides the obvious) is that I'll have no chance to travel anywhere all summer. I really wanted to go somewhere. Now, the best I can do until September would be weekends close by, NYC or DC, which I've done plenty of in recent years so I really would need a good reason to go again. Maybe a quick trip to the shore?
But with the radiation done by Labor Day, I assume, I should be okay to go back to work at LIHEAP (assuming there aren't more budget cuts that prevent them from calling me back), although if I could get another job before that I wouldn't mind. I'm not sure I can make a legitimate job search at this point, though. If someone wants to just offer me a job, get in touch.
Well, I've been writing this for hours (with brief breaks) so for now I'll stop. I'll keep you updated with new developments. I thank everyone who's reached out with prayers, vibes, good wishes, etc. Fingers crossed that I'll be around for a good long time. If not, the Eagles will win the Super Bowl before I die or I WILL HAUNT EVERY SINGLE PERSON IN THAT ORGANIZATION FROM BEYOND THE GRAVE. I WILL MAKE THE DEMONS FROM THE "PARANORMAL ACTIVITY" FILMS LOOK LIKE THE SMURFS BY COMPARISON!
P.S. If you read this entire thing, please comment below or on Twitter or Facebook and let me know. I'm really curious.