Returning to Kansas City

Welcome back to the next Thriving not Just Surviving blog post. After an encouraging round of doctor appointments last Monday, I was given the green light to return to Kansas City. Maureen and I returned on Tuesday and I have been settling in for the past few days.

There isn’t much new information to report, but I continue to be stable and free of seizures for two months. We probably will never know the actual cause of the seizures, but the anti-seizure medication is working. My neurologist says that I will be on this drug for at least two years and if the seizures never return we would consider lowering the dosage. The side effects of this drug have continued to decrease now that I’ve been on it for over two months; but I occasionally have to deal with brain fog, fatigue and minor achiness.

My shoulder is also doing well and the surgeon estimates that its probably 60-70% healed. I will start weight bearing exercises at physical therapy next week. Pain is very minimal and most of my range of motion has returned.

The recurring advice from my doctors is to take things slow and ensure that I get plenty of rest. I’m glad that the epilepsy continues to be under control, but I have to be extra careful now that I have to manage lung cancer and epilepsy.

I’ve been working remotely throughout my time in St. Louis and will continue to do so for the next week. I plan to return to the office the first week of May. I am very excited to get back to  a more normal work routine.

There won’t be anything major occurring over the next few weeks. I plan to continue getting stronger and increasing the intensity of my workouts and therapy sessions. Maureen and I will return to St. Louis at the end of May for another chest CT scan.

Positive Progress

Welcome back to the next Thriving not Just Surviving blog post. Its been a quiet, but productive past few weeks. Progress has been slow, but I feel that I am getting closer to "normal".  

I have continued to attend physical therapy twice a week and rehab of my right shoulder has begun. I do brisk walking for 30-40 minutes several times a week in addition to my stretches and exercises from physical therapy. Pain in the right shoulder is minimal and only bothersome at night. I rarely use the sling and the rehab exercises have greatly expanded the range of motion. When I saw my oncologist on Thursday the first thing he said was “This is the first time I’ve seen you over the past two months when it doesn’t look like you’ve had 5 beers to drink.” I’ll take that as a compliment because I know I’ve been "out of it" due to the seizures and various medications.

Earlier in the week I underwent another brain MRI. Once again, it came back clean. We weren’t expecting to see anything, but my oncologist ordered it as a precaution. The blood work that was testing for an autoimmune response from cancer treatment also came back negative. This means that we can officially rule out an autoimmune response as the cause of the seizures. My oncologist said that its nearly impossible to rule out cancer as the cause of the seizures because there is always the possibility that a tumor small enough to be undetected could be present. However, this is very unlikely given that the first seizure occurred over 6 weeks ago and a tumor would most likely have grown large enough to be detected by the most recent MRI. The major takeaway from the recent batch of tests is that my cancer continues to be under control and its extremely unlikely that the cancer or cancer treatment contributed to the seizures.

I still don’t have an exact date for my return to Kansas City, but my lung cancer is no longer a barrier. The focus now shifts to my neurologist and his comfort level with the effectiveness of my anti-seizure medication. I’ve now been seizure free for over 5 weeks. The neurologist said that 1-2 months of no seizures means that the medication will most likely be effective for the long term. My follow up appointment is scheduled for April 16. I’m hoping that I will have a return date to Kansas City following that appointment.

It feels great to get all of these issues under control. I feel much better physically, emotionally, and mentally.  Back in February it felt like the medical issues were really starting to “pile up” and I was left thinking to myself, “What else is going to go wrong?”. Excellent medical care, a healthy lifestyle, prayers, and support have been the perfect medicine over the past few months.

A Comprehensive Recap

Welcome back to the next Thriving Not Just Surviving blog post. As expected, it was a much slower week with fewer doctor appointments, giving me time to continue digesting the information and events from the past month.

Over the past few weeks I've released a ton of information in the blog regarding the issues that I'm dealing with, but I haven't provided much perspective as well as impact of these issues. I'm going to use this post to give an overall status update on the three medical issues that I'm dealing with and the current plan for moving forward.

Lung Cancer
This is still by far the most serious medical issue. However, it is currently the most controlled. Immunotherapy treatment has been discontinued since last August and my immune system continues to keep the remaining cancer in check. Despite all of this, I'm not considered to be in remission because I still have active cancer in my right lung. Additionally, the cancer is still classified as stage 4. We don't know for sure how long my immune system will be effective in fighting the cancer. It could be forever or it could be a few months. If the cancer begins to progress again we do have several options to manage it.

Epilepsy
Currently, this is the most complex of the three medical issues. Most people that experience seizures never do identify the actual cause. The current plan is not so much about identifying the cause, but ruling out potential causes. The primary cause that needs to be ruled out is an auto-immune response from the immunotherapy I received last year. If this is ruled out then our treatment plan should be fairly simple; taking anti-seizure drugs to manage the epilepsy. We hope to have the test results within the next few weeks that should provide more clarity. 

I've talked with several individuals that have dealt with seizures and discovered that most people with epilepsy are able to effectively manage seizures with medication or lifestyle changes. Many people can go decades without having another seizure. In fact, some epilepsy patients never have another seizure after finding a medication that works.

The severity of the seizures has made this a more complex issue for me, due to the potential for injury. Maureen and I learned a mind boggling seizure fact this past week regarding the physical strength a person experiences during a gran mal seizure. A person experiencing a severe gran mal seizure can obtain strength 10 times their normal strength. Literally superhuman strength. Strength that can shatter the strongest bones in the human body.

Fractured Shoulder
Although this is currently the most painful of the issues, it is also the easiest to fix. My orthopedic surgeon is fairly confident that surgery will not be required, but we won't know for sure until more healing occurs. I already do not have to use the sling 100% of the time and the pain is lessening. I've started performing basic stretches to test my range of motion. Full rehab won't begin for at least a few weeks.

As you can see, all three issues are currently manageable. The intersection of them increases the complexity and uncertainty of the path forward. I'm blessed to have a comprehensive team of doctors that can provide guidance.

I would be remiss if I didn't specifically call out my parents and their amazing support over the past month. My mom has provided my transportation to and from doctor appointments. My mom and dad have been on call 24/7 to ensure that I receive medical care in the event of another seizure. I could not ask for better more supportive parents.

I still don't have an exact date of my return to Kansas City, but I'm hoping sometime in April. I miss all my friends, coworkers, and acquaintances very much. I've enjoyed the kind words and cards that I've received.

A Very Busy Week

Welcome back to the next Thriving Not Just Surviving blog post. The past week has been very busy with several doctor appointments, physical therapy, and working remotely.

There are still outstanding questions, but we did receive some answers as well. Physical Therapy continues go well. My back pain has improved significantly and I continue to increase my activity. On Wednesday I visited with my shoulder specialist who delivered the good news that my shoulder will most likely not require surgery. There is the potential for a minor arthroscopic procedure to clean up scar tissue. However, we are still at least 6 months away from making that decision. In the meantime, I will continue to use a sling on my right arm. I hope to start physical therapy on the shoulder in the coming weeks. Despite not requiring surgery, the doctor was surprised at the extent of the shoulder injury. He remarked that normally the only time he sees an injury like this is when someone has been electrocuted.

The most important part of the week was the appointment with the neurologist. Maureen and I spent over an hour with the neurologist reviewing the events of the past few weeks, viewing the neurological test results, and getting a better understanding of my seizures.

The seizures that I've experienced are considered gran mal seizures. This is a type of seizure that is usually more serious in nature with violent muscle contractions throughout the body. Unfortunately these types of seizures are most commonly associated with serious injuries. The neurologist said I was lucky to only experience a fractured shoulder from the 4 gran mal seizures. Additionally, since I've had more than one seizure, I was formally diagnosed with epilepsy. We don't have an official cause, but there are two potential likely causes: genetics and an immune response from my cancer.

There is a history of epilepsy on my dad's side of the family and its possible that I have the genetics associated with seizures. The immune response from the cancer is a slightly more complicated cause. To keep it simple, its possible that the tumor in my lungs is releasing proteins that contain the bio-markers that my immune system uses to identify attack the cancer. These proteins, although not cancer cells, could be in the brain and my immune system is mistaking the proteins as cancer cells which results in an immune response in the brain. The immune response could trigger a seizure. I underwent blood work that will check to see if these proteins are present.

Both potential causes do have remedies. If the seizures are genetic, I will most likely continue on my current seizure medication for the foreseeable future. If the blood work tests positive for the proteins, there are additional immunotherapy-type treatments that can retrain the immune system to distinguish between the proteins and actual cancer cells. We won't know the results of the blood work for a few weeks.

The neurologist said that it was encouraging that I've not had any further seizures since starting the anti-seizure medication. However, I'm not out of the woods yet. At least a month needs to pass since the last seizure to have more confidence in the effectiveness of the medication. He stressed the importance of rest, safety precautions, and stress reduction as the most important remedies to avoid a relapse. 

Over the past few weeks since the last seizure I've experienced some short term memory loss. Although scary and frustrating, this is to be expected. Since returning to work and increasing my mental stimulation, the memories have started to return. I've found that having conversations, even over the phone, have helped recall some of the memories and reduced the brain fog.

Its obviously been a very busy week and I've provided a ton of information in this post. I'm hoping that the upcoming week is slower with less news. I plan to use the posts over the next few weeks to provide additional details from the neurological testing and the implications of epilepsy and stage 4 lung cancer.

Continued Recovery

Welcome back to the next Thriving Not Just Surviving blog post. Its been an overall better week, although we are still searching for some answers.

I have not experienced any additional seizures which has given my body the opportunity to continue recovering. We visited with an advanced orthopedic shoulder repair specialist. He explained that my right shoulder popped out and back into place during one of the seizures. This movement resulted in a displaced fracture of the humeral head. I will be undergoing an MRI next week so the surgeon can get a better view of the fracture. He is not ruling out surgery, but will not make a final decision until after the MRI is complete.

I am continuing with physical therapy to address my residual lower back pain from the seizures. I have a follow up appointment with a lower back orthopedic surgeon next week.

I initially had a chest CT scan scheduled for next week; however, my oncologist felt it would be better if we had the scan taken when I was already in the hospital last week. We reviewed the results of this test a few days ago during our appointment. The new spot that had shown up on the scan from two months ago was no longer present. This means that in all likelihood, the spot was a residual effect from a lung infection. My immune system was able to fully eliminate the infection so the spot is no longer visible. The only remaining tumor remained consistent in size as well. So overall, it was another good scan with my immune system continuing to keep the lung cancer from progressing.

While the scan was good news, it makes it more difficult to explain the seizures. There is no visible cancer that could have caused the seizures. The additional tests performed by the neurologist from the spinal fluid also came back negative. I am meeting with a neurologist next week to continue "troubleshooting" the seizures. 

So as you can see, there is lots of activity still occurring as I continue to recover from the seizures. I expect to stay in St. Louis for the foreseeable future to continue with physical therapy, determine a course of action on my fractured shoulder, and undergo more neurological testing.

I am blessed and lucky to have access to one of the top neurology hospitals in the country. Barnes Jewish hospital is currently ranked 7th in the country and number one in Missouri for neurology and neurosurgery. They are designated as a Level 4 Epilepsy treatment center which is the highest level that can be attained. At one point Barnes Jewish was one of only three epilepsy centers in the nation to receive  the specific Joint Commission on Accreditation of Healthcare Organizations (JCAHO) certification for treatment of Epilepsy. Barnes-Jewish Hospital was one of the first hospitals in the United States to use brain surgery on a regular basis to treat patients with seizure disorders that were unresponsive to medications.

I don't list off these accomplishments to boast but to illustrate while Maureen and I have invested the time and resources to transfer my medical care to St. Louis. When we received the stage 4 cancer diagnosis we both knew that we already had the odds stacked against us and we needed to do everything possible to give me the best chance. The cancer care offered at Siteman Cancer Center was a significant upgrade compared to the treatment  offered at University of Kansas for stage 4 lung cancer patients. We are staying with the Barnes Jewish "network" for my seizures due to the same reason. This will mean that more time will be spent in St. Louis, but I know that this is the best place for all my medical treatment.

Its not uncommon for cancer patients to travel great distances to receive the best available treatment for their situation. I am thankful that I was able to receive the best available care in a city with support from family.

I am looking forward to my continued recovery in the coming week and returning to a more normal routine. Hopefully by this time next week we will have a course of action with my shoulder and a high level game plan for determining the cause of the seizures.

Seizures

Welcome back to the next Thriving Not Just Surviving blog post. Its been another eventful week of doctor and hospital visits. 

 Up until a few weeks ago I didn't know what it was like to experience a seizure and I never gave much thought about epilepsy. Since Sunday, February 11, I've had 4 seizures with each one increasing in intensity. This past Tuesday I experienced another seizure during the night. I was taken to the emergency room the next morning and I experienced another seizure in the emergency room. I have no memories from these seizures, but I experience intense pain from the convulsions when I wake up. In fact  one of the seizures was so intense that I actually partially fractured my right shoulder.

I was admitted to neurology center at Barnes Jewish Hospital on Tuesday evening to undergo testing. I was seen by several different neurologists and underwent an Electroencephalography (EEG). This test monitors the electrical activity of the brain. The test failed to reveal anything abnormal. I also had my spinal cord tapped for fluid. The first round of tests completed on the fluid revealed nothing significant, but we are still waiting for some of the results.

Despite all the testing and checkups from multiple neurologist,s we were not able to identify the cause. I continue to exhibit epileptic symptoms with no identified cause. The good news is that I respond positively to anti-seizure medicine. Fortunately, epilepsy is treatable and most patients are able to keep seizures under control by taking a daily medication. So far the medication appears to be working. However, my oncologist is still wanting to learn more about this because there is no reason for me to be having seizures.

I was discharged from the hospital on Friday afternoon and I am spending the weekend recovering from a grueling hospital stay. During my stay I was seen by many different doctors in an attempt to diagnose my seizures. Thus far in the cancer journey this has been the most painful part. I have no memory of experiencing the seizures, but the pain is intense when I wake up after the seizure has passed. I experienced more pain during the past two weeks than during any other part of the lung cancer journey. I am very thankful for high strength narcotics.

The cancer journey was bound to get tougher. I just never expected that epilepsy would play a role. This week I resume physical therapy to continue recovering from the seizures. I'm looking forward to putting the pain behind me as much as possible. 

A Rough Week

Welcome back to the next Thriving Not Just Surviving blog post. I initially planned for a blog post this week that discussed how no news was good news. However, the events of the past few days have dramatically changed that plan.

On Sunday evening as I was falling asleep in bed I experienced two fairly severe seizures. Each one was about a minute in length and a minute apart. The only recollection I have is being unloaded from an ambulance at the emergency room. A CT scan of my brain later in the night revealed nothing imminently wrong. After I was discharged a few hours later Maureen and I departed for St. Louis to be in closer proximity to my cancer medical team.

On Monday I underwent a full brain MRI to check for brain tumors. Fortunately, the MRI came back clean. This is very good news. With the exception of actual brain cancer, lung cancer is the type of cancer that most often spreads to the brain. It’s not uncommon for lung cancer patients to have numerous tumors throughout their brain once they start exhibiting the common symptoms of brain tumors. Seizures are one of those symptoms.

The bad news is that we don’t know the cause of the seizures. According to the neurologist we visited with, 60% of people that experience a seizure never have them again. I hope that I’m part of the 60%. However, I am restricted from operating a motor vehicle for at least 6 months. This is a precautionary measure for my safety and the safety of other drivers. This piece of news was very frustrating, but I am thankful that I should still be able to live an otherwise active life.

Muscle pain is the only residual effect from the seizures. I saw an orthopedic surgeon on Wednesday and he x-rayed my back to check for fractures. The x-ray came back clean, but he prescribed several rounds of physical therapy to manage the pain and regain my range of motion.

Obviously this has been a tough week. Over the last few weeks I felt that I had put the lung cancer in the rear-view mirror; at least for the next few months. Now I have to manage lung cancer AND the potential of future seizures. As frustrating as the seizures are, I’m confident that I can put this behind me as well. I’ve beat back terminal lung cancer over the past year which was significantly more serious than an episode of seizures.

Over the next few weeks I will be in St. Louis to complete my physical therapy and for follow up appointments with various doctors. I can’t overstate the gratitude that Maureen and I have from the outpouring of prayers and support.