Finishing Up 2018

Welcome back to the next Thriving Not Just Surviving Post.

This post is written by Maureen. I moved to St. Louis this past weekend. It has been wonderful celebrating the holidays here and settling in.  

Greg has had quite a few follow up appointments since the last post. Here is a quick overview and update: He has seen his Orthopedic Surgeon and has been released from the “gun slinger” brace and has now been assigned the “sling shot” sling. (Picture provided). He will wear that for another six weeks while starting physical therapy to rebuild the strength and range of motion in his right arm and shoulder. His neurology appointment went well, with no change, but continuing the current seizure medicine regimen. We had our three-month chest scan and appointment with the oncologist as well. The scan showed that the cancer is stable but Greg will be undergoing additional testing over the coming weeks to further analyze the remaining cancer.

It has been an eventful 2018 and we are ready for a more stable and calm 2019.

We will continue to use the blog as a way of updating everyone. Thank you for your prayers and support!

Another Transition

This post is written by Maureen.

Greg’s shoulder is healing well. He met with his orthopedic surgeon for his post operation visit and the doctor was pleased with his healing. He remains in the brace until his next follow up the second week of December. Greg has been able to start showering and taking the brace off a few times during the day. He has been enjoying both very much!

Since February 2018 when Greg’s seizures started, we have been sporadically traveling between Kansas City and St. Louis. Many of the trips have been unplanned, leaving Kansas City at the drop of a hat and without an exact return date. For long stretches of time Greg has been in St. Louis recovering, while I returned to Kansas City to continue teaching. We have been incredibly blessed and thankful that both of our employers, the Federal Reserve Bank of Kansas City and Park Hill School District, have worked with us to maintain our jobs and navigate the medical ups and downs.

We have had a few precious times when we’ve both been in the same city for a small amount of time. After we moved Greg to St. Louis permanently at the beginning of October, we knew that at some point I would follow.

We have come to the realization and decision it is time for me to move to St. Louis permanently. At the end of the school quarter in December, I will be moving permanently to St. Louis. Greg and I are sad to leave Kansas City, but we are excited about the new beginning that awaits us.

I will be returning to Kansas City every 6 weeks or so to visit and service my Mary Kay customers. Kansas City has been such a source of love and support for us. We are sad to leave and are grateful for all of you!

We will continue to update everyone here and on Facebook. Please continue to pray for us as we settle in St. Louis as well as Greg’s continued recovery.

Emergency Surgery

Welcome back to the next Thriving Not Just Surviving Post. (This is written by Maureen).

Greg went in for an appointment with a new Orthopedic Surgeon Wednesday October 31^st to get a second opinion. We were pleased with our first Orthopedic Surgeon but with Greg’s complicated case and not being in the same network as the rest of his ever-growing team, we decided to switch. Greg had been having constant pain since the Oct 9^th &10^th seizures and he was hoping to find relief, as well as plan for the future for his shoulder. I was not planning on going to STL for the appointment and was able to call into the appointment instead. As we started discussing the situation with the doctor, he reiterated everything we already knew. (These include: that Greg’s shoulder was in rough shape, that there were chunks of bone from both the “ball” and “socket” missing from his many dislocations and fractures from each seizure, and that he would need an extensive shoulder surgery when the seizures stopped). He also confirmed that there was not much that could be done until the seizures stopped.

As the conversation went on, he said that Greg’s shoulder was currently dislocated and probably had been since the last seizure, which was 3 weeks ago. This explained Greg’s immense pain. The doctor went on to say that if a shoulder remains dislocated for more than 6 weeks, the ball itself would soften and the shoulder will be completely un-usable.

I don’t have to tell you that all of this was a shock to hear. We knew the shoulder wasn’t in good condition, and we knew there would be a shoulder replacement someday. However, to hear that he needed surgery tomorrow, and that the surgery may or may not even work (due to the extensive damage and the duration for which it’s been dislocated), was a lot to swallow at once.

So, into surgery mode we went. Greg and his mom remained at the doctor’s office the rest of day and went through the pre-op protocol. I was able to get into STL at a reasonable hour and help him follow the at home preparations for surgery the next day (Thursday).

All of this has affirmed our decision to immediately move Greg to STL. He is such a complicated medical case. We really needed to have ALL his care under ONE umbrella of physicians with very high level of care. His surgeon was immediately able to feel, and see in his x-ray, the dislocation. We are thankful for his medical team here as well as his family who are so willing and ready to step in and help!

The surgery went well, although there was more damage than was first thought. The back of Greg’s shoulder is completely gone, although the cartilage is intact. They entered from the front side of the shoulder and “shoe-horned” the dislocation back into place. They also attached the tendons back to the bone where it had separated. All, with the lack of bone structure around the whole ball and socket, if Greg were to move his arm toward his abdomen at all, it would slide back out of socket. He has quite the contraption to keep his arm immobilized and in place for the next 6 weeks. The sling was custom-made overnight just for this procedure and situation. They call it “the gun-slinger”. It is quite the sight and his right arm does looks like he is holding some sort of weaponry and ready at a moment’s notice! Again, for the next 6 weeks, 24/7 he will be in this to ensure that the shoulder heals and remains in place.   

We are so grateful for all the prayers. Our biggest prayer is that the seizures stop, and he is able to heal his shoulder completely from this surgery and look forward to a complete shoulder replacement in the future to gain his full mobility back.

Big News

Welcome back to the next Thriving Not Just Surviving blog post. Buckle up for a big post!

As you know when I was diagnosed back in March 2017, KU Med informed us that they did not have the resources to properly treat my specific form of non small cell lung cancer. Therefore, we sought out Siteman Cancer Center in St. Louis. Since then we have continued to add to our St. Louis Medical Team with two Neurologists, two Orthopedic surgeons, a Physical Therapy Staff, a Sleep Nurse Practitioner, a pulmonologist,  and a few more specialists.  

It should come as no surprise that we have come to the point in time where we need to relocate to St Louis. My immediate family is all there as well as the Medical Team described above. Starting tomorrow (due to the recent seizures) I will be moving permanently to St. Louis. Maureen will follow, moving to St. Louis in May, following her school year. I will continue to work remotely in my current job and I am infinitely grateful for the support and flexibility that my employer has shown since my initial cancer diagnosis.

It is with great hope that we make this move to establish more normalcy in our lives and not experience a constant “fire drill” with each seizure or health concern.

It is also with sadness that we leave Kansas City. It has been our first home together as we started our married life and we have met so many incredible people. We have also experienced such an outpouring of support, prayers and love during the last 18 months. You will never know how much those prayers and support have meant to us. God has blessed us in so many ways through you, thank you for being that instrument.

We ask for continued prayers. Although we can’t say that I will be back in Kansas City often, however, Maureen plans to continue visiting Kansas City to continue servicing her Mary Kay customers. Please stay connected through the blog and through Facebook. Please don’t hesitate to reach out, we will respond as we are able.  

(This blog was written by both Maureen and Greg :)) 

Preparing for the Unknown

Welcome back to the next Thriving Not Just Surviving blog post. Following the seizures on September 2 and 3 I spent the next 10 days in St. Louis following up with multiple doctors from my medical team.

We met with my neurologist, and unfortunately, we still don’t have any answers. Since February when the seizures started I’ve undergone four brain MRIs, nearly 200 hours of EEG monitoring, 2 lumbar punctures, numerous rounds of blood work, and we have yet to receive a positive or abnormal result on any of these tests. Despite the negative findings, the seizures continue to happen with increasing severity and frequency. It’s looking more and more likely that I have a very hard to manage form of epilepsy that doesn’t respond well to medication and only presents in very sporadic occurrences. We are going to continue working with my neurologist in an attempt to find a medication regimen that works and we’re also looking into some diet and holistic changes to incorporate into my lifestyle.

On Thursday I underwent my routine (every 3 months) CT scan for the lung cancer. You might remember that the last scan showed several enlarged lymph nodes which could be indicative of the cancer returning. This latest test showed that most of the enlarged lymph nodes shrunk to their normal size while different lymph nodes grew in size. My oncologist said that this does not appear to be cancerous activity. This appears to be an immune response to an infection. My body has taken quite a beating over the past year and its likely worn down and struggling to fight infections. While this is not ideal, its infinitely better than the cancer returning. It just means I have to make a concerted effort to rest and remain in good health.

My injured shoulder is going to be the next major decision that we will have to act on. It continues to sustain damage after each seizure. While it continues to heal remarkably well each time, it can only take a limited amount of hits. I underwent a CT scan to give my surgeon a better look at the current state of the cartilage, bone, and joint. The scan actually looked better than we were expecting and showed that my shoulder is healing fairly well. The major concern is that the shoulder never completely heals after each injury and the bone and cartilage are breaking down slowly over time. The amount of irreparable damage done since the seizures started in February 2018 shows that I have only a few injuries left before we will need to perform some type of surgery to rebuild and re-enforce my shoulder.  In most cases this could be a fairly routine decision and procedure to complete. However, the seizures continue to occur and could potentially undo any surgery. I’ll spare you the details of the different procedures that we could try or modify for my situation, but its going to be the focus over the next few weeks. My oncologist wants me to get a second opinion and is referring us to one of the top shoulder specialists in the country. Hopefully within the next month we’ll have a better idea of what the realistic options for surgery are. In the meantime, I’ll continue to rehab the current injury as best as possible.

Its pretty obvious to see that its been a rough past few months. I’m not the type of person that is going to lie or gloss over the facts to preserve positivity. The honest truth is that I remain positive despite the recent setbacks and continue to have full confidence in my hand-picked medical team. However, Maureen and I will be faced with some big decisions in the coming months and have to plan our future with the possibility of never being seizure free and the potential of the cancer eventually returning. I’m ready for this and Maureen and I do have a vision of a great life despite these long-term issues.

More Seizures and Dealing with Incompetent Medical Care

Welcome back to the next Thriving Not Just Surviving blog post. For those of you following us on Facebook, you already know that I had another seizure on Monday night – 24 hours after the seizure on Sunday night. I’ve never had back to back seizures quite like this before. The seizure on Monday night was not as violent, but lasted much longer – over two minutes. The concern with seizures that are long in duration is that they can eventually cause brain damage. Our neurologist told Maureen and I that two minutes is the most I can go without risking permanent brain damage. Unfortunately, the seizures appear to be worsening as a whole. I went 6 weeks being seizure free, but then had two severe ones back to back. I’m hoping that this means I will be seizure free for a while, but there is no way of knowing. 

It’s unfortunate and a sad state of affairs that I have to use this channel to conduct this sort of activity, but the recent events as well as events all along have left me no choice. This may sound petty and complaining, but I really don’t care as long as I can help other patients in the Kansas City community avoid the absolute worst hospital in the area, which is St Luke’s Barry Road. This has been our go-to hospital because of its close proximity to our home. However, the care provided at this facility continues to be worse than unacceptable and I can no longer gloss over the lack of care we have received throughout the past several months. I’m not recounting these events for sympathy points. Believe me, being a stage 4 lung cancer patient and now with epilepsy will get you more sympathy points than you can handle. I’m bringing this to light so other patients don’t have to experience incompetent medical care and can go to a better hospital.

I’m all about second and third chances, but I draw a line when the problems become more prevalent and impactful. Over the past seven months we have spent numerous times in the emergency room at St.  Luke’s; by the direction of our St. Louis neurologist to seek medical care after every seizure. After Sunday’s seizure I was transported by ambulance to the emergency room. They gave me basic pain medication and valium to prevent further seizures. However, the X-ray technician was so incompetent that they could not get a conclusive picture of my right shoulder. They released me Sunday evening with no clear picture of my injured shoulder. (We found out from a St Louis Orthopedic Surgeon that I may actually need a complete shoulder reconstruction from the x-rays that were taken Saturday).

I had another seizure Monday evening. This was more concerning than the first because it lasted for over two minutes; creating the risk of brain damage. I was transported again to the St. Luke’s ER. However, I was left in the hallway despite several empty rooms. Normal protocol dictates that the nurse or doctor at least question you about the type, duration, and severity of the seizure. None of this happened. In fact, they were even unwilling at first to give me valium to prevent further seizures. We inquired about pain relief and the ER doctor flat out refused saying “he wasn’t going to argue with us”. He went on to say that normal people with epilepsy shouldn’t go to the emergency room. They should just learn to take their medicine and follow up with their neurologist. Either this ER doctor is incredibly stupid, like many of the doctors at St. Luke’s, or refused to listen the patient’s request. Both are unacceptable. Additionally, the nurse on Monday was cold, short, and flat out crabby. She refused to include Maureen in any of our discussions. They were more than ready to charge us the $200 for the visit. Not really sure what we actually got for that $200 because they didn’t even try to conduct an X-ray.

I just retold a story from a single visit to the ER. I can tell countless more stories of incompetent doctors, dirty facilities, and poor customer service. When I stayed for 3 days in July the St. Luke’s neurologist refused to consult with my primary neurologist and went against his wish and put me on a medication that I was allergic to. When we came back to St. Louis to the Epilepsy Monitoring Unit (EMU) the Neurology team could not understand why they put me on a medication that would have limited impact and cause an allergic reaction. I’m guessing the St Luke’s neurologist, who already is not good at his job, didn’t want a more prestigious hospital second guessing his decisions. However, that’s exactly what happened.

I have already communicated these concerns to the St. Luke’s patient advocate. So the ball is in their court if they are going improve. If I had to make prediction, they won’t, due to their arrogance and lack of knowledgeable staff, but we will see. In the meantime, I cannot recommend the St. Luke’s health system to anyone. Maureen and I will be finding a different hospital to use for any medical care in the Kansas City area.

I’m back in the St. Louis area surrounded by doctors that I trust. I have a chest CT scan and oncology appointment on Thursday. I expect another blog post within the next week with those results as well as more details about the next steps in managing the epilepsy. Thanks again for the continued prayers and support.

Test Results and Another Seizure

Test Results and Another Seizure

Today will be written by guest writer, Maureen. Excuse the difference in style and potential grammatical inaccuracies.

Last Thursday evening, Greg's birthday, we finally received the long-awaited test results from the Mayo Clinic that would confirm or reject him having Autoimmune Epilepsy. (This is only based on the autoimmune biomarkers they have at this point. There have been new biomarkers discovered since we last tested in February. This is a rapidly changing field. Therefore, Greg still COULD have autoimmune epilepsy, but at this point it cannot be confirmed.) We were praying that it would be positive to give us a "better" treatment option. The negative results were hard for me (Maureen) to hear, but Greg, as always keeps a level head about it. We are not sure what our neurologist will want to do from here. At our last appointment with him in August he said that even if the tests were negative, there would still be options for us.

Last night, after 6 weeks of being seizure free, Greg had a seizure. This one was significant for a few reasons. First, it confirms that the medicine has been helping, but is not our long term solution to being seizure-free. Second, Greg was alone on a walk. As all of his prior seizures have been asleep, or much later in the evening (after 9:00pm), we have been cautious but felt comfortable with Greg doing things independently during the day. He has taken a few walks a week on the trail by our apartment, and at only a mile, we've been comfortable with that. However, yesterday, as he was returning from his walk, he started to feel funny (his "aura") and he laid down on the grass. Thankfully, people driving by stopped to help him, saw his Medical ID bracelet and my number, called EMS and myself. I am so thankful. I do not know who these angels were, but they were angels.  Thank you. I'm sure at first glance it looked like he was doing odd stretches in the grass, but they checked, thank you. It gives me hope in our society. When people are in such a hurry, and often distracted by their lives, it can be easy to pass by, assume everything is okay or think someone else will stop. Thank you. (Sorry for the Maureen comments here).

We went to the ER, as our normal precaution. He was stable and did not have any other seizures. He did re-injured his shoulder. We were released and upon returning home realized that our AC was broken. We are thankful for endless support around and have been staying with a friend, bless you!

We do not have answers at this point. We will be speaking with our neurologist later this week. At this point our next trip to STL is next week with a CT can and a followup with our oncologist.
We are so grateful for the prayers, the support and all of outreach. It is hard to know what we need at certain times, but prayer is always needed!

God is always with us. We may not understand the reason for our journey but He is with us through all of those around us and in many little blessed ways.

Epilepsy Monitoring Debrief

Welcome back to the next Thriving Not Just Surviving blog post. Its been a very long past few weeks. A very special thanks to my wife, Maureen, for contributing to the blog during my hospital stay.

Most of you are already probably aware of my hospital stay in the Epilepsy Monitoring Unit. Unfortunately, we were unable to provoke any seizures during the stay. This clearly was not the outcome we wanted. Provoking a seizure while undergoing video EEG monitoring would provide the neurology team with valuable information that could aid in identifying the best possible treatment for my seizures. Nevertheless, I was recorded 24 hours a day for seven straight days and no abnormal brain waves were recorded. Some epilepsy patients always have abnormal brain waves, even during periods of non-seizure activity. Based on the findings, I only have abnormal brain waves during periods of seizure activity.

As far as moving forward with my epilepsy, my oncologist and neurologist want to perform additional testing to check for autoimmune epilepsy. You might remember that we tested for this when the seizures started back in February 2018. However, its possible that we tested to early and that there was not enough immune activity to show up in the test results. Now that I’ve had multiple seizures over the past 6 months its possible that the test results may come back positive. I could type several pages explaining the complexity of autoimmune epilepsy, but I’ll wait until we complete the tests for this. We’ve added an additional neurologist to my medical team who specializes in autoimmune epilepsy and we’ll be leveraging his expertise to assist with the testing as well as treatment if the results come back positive.

I know Maureen already provided most of the updates regarding the hospital stay, but I will mention that it was by far the most difficult hospital stay I’ve had to do. I think the primary reason was not being able to leave the room because I was wired to the EEG the entire time. Moving around the room was difficult and I won’t even get into not showering for the duration. It was a great lesson in patience and enduring the lack of comforts from home.

Prior to beginning the monitoring on Tuesday, July 24 we had a lung cancer scare. I began experiencing minor chest and back pain on Sunday that began to worsen towards the evening. By Monday morning it had become painful to breathe. These were the exact same symptoms I exhibited prior to my lung cancer diagnosis. In an attempt to avoid the situation worsening I was taken to the emergency room. A CT scan showed a very minor pleural effusion (fluid in the lungs), several enlarged lymph nodes, a fracture of my right scapular, and bone fragmentation throughout both shoulders from the seizures.

So what does all mean? At the worst case scenario, it could mean that the cancer is returning. Best case scenario, it could mean that I was fighting a minor viral infection in the chest and the lymph nodes were slightly enlarged as part of the immune response to fight the virus. I think that this is the likely scenario as I was running a very slight fever for a few days.

To ensure every precaution is being taken, my oncologist performed a liquid biopsy on Thursday. This is a blood test that looks for concentration of cancer cells. If the concentration of cancer cells is increased, then it’s likely the cancer is returning and we will move forward with additional testing and treatment. At this point there is no reason to panic as we are being overly cautious with this.

Next Steps

We’ve returned to Kansas City for the short term and we are waiting to hear back from the neurologist about a date for completing the testing for autoimmune epilepsy. We hope to have the results back from the cancer liquid biopsy within the next 10 days.

Day 7 EMU and HOME

Day 7 LAST DAY July 30, 2018 EMU, Barnes Hospital/Home to his parents in STL

We were discharged today at 5pm. The discharge process takes a very long time to ensure that everything is in place. We seem to be a special case as well. Since Greg did not have any seizures the neuro team at the hospital had to touch base with our current STL neurologist to decide what approach to take with medicine. They finally decided to keep the level of Keppra, (the medicine he has been on since the start) and take away the extra medicine that was added when we were in KC at the hospital after his July 15^th seizure. However, they added in a medicine he was on for or short time and changed it to twice a day to help fill in the gap so to speak. The next few days will be a challenge for hiato reacclimate to his seizure medicine plus the additions. He has been off all medicine since Tuesday evening, the fog from the medicine had cleared and he’s been very clear-minded the last few days! The medicine fog is just one of the trade-offs with attempting to be seizure free. He will readjust again.

The last 7 days were challenging in many ways. Greg was essentially in a small room, unable to leave or shower. He kept good spirits and was very glad to get home and shower tonight! We trust that in the big picture things were gained from this stay. We will follow up with our neurologist (hopefully soon) and should see more of the benefits that came from this. We are so grateful to all of you.

(If you prayed the Solanus Casey Novena with us, thank you, today was the last day and it is his first official Feast Day!)

Blessings

Day 6 EMU

Day 6 July 29, 2018 EMU, Barnes Hospital

It was a quiet Sunday here. One more day left. We expect to leave sometime tomorrow early afternoon, with or without a seizure. The Dr said it wasn’t all that uncommon not to have a seizure while here. I guess we may be part of that percentage. We have one more night. We are hoping for a seizure but know that with or without a seizure we are here for a purpose (even if we don’t see the immediate reason). After our discharge we will follow up with our neurologist and our oncologist. We are not sure when we’ll return to KC. Thank you for your prayers!

Day 5 EMU

Day 5 July 28, 2018 EMU, Barnes Hospital

Another uneventful day. We are still waiting and hoping for a seizure. It is certainly challenging sitting around waiting. I (Maureen) have been fortunate to get out a little each day, but obviously Greg is tied to his room. Being 5 days in without the progress we’d been hoping and praying for is starting to wear on us. Your constant prayers have been a consolation. Please continue to pray for the doctors to know our next steps, with or without the seizures, and for us. Thank you!

Day 4 EMU

Day 4 July 27, 2018 EMU, Barnes Hospital

In Greg’s words “my seizures appear to have stage fright”. Today was quite uneventful. Greg did complete his 20 minutes of biking. He gained inspiration as he watched the Tour de France! The big update from today was about the pain he’s been having. We had a visit from the oncologist nurse practioner. They had looked at the upper-body CT scan completed on Monday and noticed that he had a fracture in his right scapula. This would explain the intense pain and how it has “radiated” to the back and the right side. Although this sounds like a piece of bad news, we were thankful to have a reason and rule out more concerning possibilities. We are hopeful that tonight will be more eventful. Although his seizures always produce a lot of pain afterwards, having the data on the EEG would prove so helpful for the doctors and our next steps. Thank you for your continued prayers and support! Blessings

Day 3 EMU

Day 3: July 26^th, 2018 EMU, Barnes Hospital

Today was again uneventful. Greg did not have any seizures last night, as we expected him to have after staying up until 4am. Thankfully we were able to sleep in until about 8:30am. We finally saw the neurologist around 3pm and he decided to add a few things to help stimulate brain activity. Even if these don’t produce seizures they could stimulate brain waves that help them. Today Greg underwent a series of flashing lights, like a strobe light, directly in front of his face for 3 minutes. (I believe photosensitivity is what it’s called.) They also wanted him to ride a stationary bike for 20 minutes to “stress” him. However, the stationary bike they brought it was too short and small and Greg couldn’t get his legs going.  Apparently, they have a bigger version of the bike that we’ll try tomorrow. He is still battling the chest pain, so that was a concern that weighed into us holding off the bike for now as well. We thank you for your prayers, that the doctors are led to some answers over the next few days.

Day 2 EMU

Day 2: July 25^th, 2018 EMU, Barnes Hospital

Today has been uneventful. There has not been any seizure activity yet, despite stopping one of his anti-seizure medicines and cutting the other one in half. We have been given sleep deprivation orders. This means we cannot sleep until 4am and will only be allowed to sleep until 8am.

Day 1 EMU

Day 1: July 24^th, 2018 Epilepsy Monitoring Unit, Barnes Hospital

We arrived in our room at 8:30am this morning and the hooking up of his EEG began. We settled in and eventually met the attending Neurologist to find out the plan for the next few days.  Since Barnes is a training hospital, most doctors have Residents and Fellows that accompany them to learn alongside and offer input. We gave our history to them both as well as the nurse practioner (you repeat it a lot, as new nurses and doctors cycle through). We have had two lovely nurses today, who have been attentive and compassionate.

You would think that arriving for a 7 day stay where they induce seizures is bad enough. Ours has already been a little more interesting. To back up, yesterday we spent the morning in the ER as Greg had chest pains and an elevated heart rate. The tests (EKG, blood work and CT scan of the chest) where inconclusive and we went home. These symptoms were concerning at they were the ones that eventually put Greg in the hospital back in February 2017 when he was diagnosed with his Lung Cancer.  (We have a follow up with our oncologist next week after we are out of the EMU, and both his oncologist and the attending ER Dr, said to go ahead with the EMU today.) Since being admitted today his chest pain has continued and he has started to run a mild temperature, battling a fever. No one has any idea why these random symptoms are occurring. We have our plan to go ahead to start decreasing his anti-seizure medicine until a seizure is produced. I don’t know how these other symptoms come into play. What I do know is we are in very capable hands. The neuro team and staff are the best around, top ranked in the country. His oncologist is nearby, and any other medical needs that arise could be taken care of as well. Please continue to pray for the doctors, as well as Greg’s body, that we can get answers and move forward to a stable life, or miraculous healing!

Taking a More Aggressive Approach

Welcome back to the next blog post of Thriving Not Just Surviving.

The rough stretch continued this past week after I experienced another seizure on Sunday, July 15 at 9:20 p.m. After I was brought to the emergency room I experienced two additional seizure episodes which were both severe and extended in duration, resulting in a refracturing of my right shoulder. The total of three episodes forced me to spend the next few days in the hospital. I was discharged from St. Luke’s in Kansas City on Wednesday, July 18.

The biggest point of frustration and concern is that the more we have done in an attempt to remedy the seizures, the worse they have become. Despite increasing/adjusting medicine, diet changes, lifestyle changes, using a CPAP machine, and reducing stress the seizures have increased in frequency, intensity and duration. The most alarming recent development was the seizure that occurred when I was fully awake and walking around. Until now I was fairly confident that I was safe from having seizures during the day. This most recent development changes that.

The continued lack of success has forced us to make some significant changes in our approach to the seizures. A few weeks ago we discussed the possibility of undergoing  comprehensive 24/7 monitoring in attempt to pinpoint the location and cause of the seizures. At the time, our neurologist decided against it based on the risk of monitoring my complex and severe seizures as well as waiting to see if the new medication would work. We now know that the new medication is not working and my neurologist is comfortable with the amount of risk this monitoring will pose.

I am scheduled to be admitted to the Barnes Jewish Epilepsy Monitoring Unit (EMU) on Tuesday, July 24 and may be there for up to seven days. The goal of this monitoring is to learn as much as possible about my seizures and anything abnormal occurring in my brain. The most effective learning method is to induce multiple seizures that are extended in duration in which the neurologists and epileptologists will track using a video EEG. That’s all I know at this point. I expect to learn much more about what to expect over the next few days.

It’s not easy to overlook the risk associated with this approach. It was just a few weeks ago that my neurologist was concerned about broken bones and other complications stemming from induced seizures. At this point I have to put my trust in the doctors and staff at the EMU that they will be able to handle the complex nature of my seizures. Barnes Jewish Hospital does have one of the top epilepsy centers in the country and I’m confident in their ability to have success in monitoring me.

Maureen and I are hoping to do regular posts during my time in the EMU. Stay tuned for much more later this week.  

Staying the Course

Welcome back to the next blog post of Thriving Not Just Surviving. Despite the holiday on  July fourth, its actually been a fairly busy week in terms of medical news. There are no new seizures to report and my shoulder is starting to feel much better. A visit with the orthopedic surgeon on Thursday confirmed that the same part of the shoulder was injured, but the fracture appears to be no worse than it was several months ago. Essentially, the shoulder has been reinjured in the exact same spot, but not nearly as extensive.

If you remember from last week’s blog post, I underwent a 24-hour EEG monitoring session in attempt to detect abnormalities in my brain waves. Many epileptic patients have abnormal brain waves even during periods in which they are not seizing. The EEG usually can detect these and aid the neurologist in diagnosing and treating epilepsy.

The results of my EEG session came back completely normal. This may seem like a good news because it means that either my brain is completely normal during periods of seizure free activity or the abnormalities are so small and deep inside the brain making them undetectable by any type of brain monitoring. However, without any information obtained from the test it makes it very difficult to pinpoint the location and cause of the seizures. This was my third normal EEG test since February and I’ve also undergone several brain MRIs in attempt to detect structural abnormalities that could be inducing the seizures. The MRIs have come back normal as well. 

What Does This Mean?

This means that my seizures/epilepsy will continue to be difficult to treat and diagnose. I am currently not a candidate for brain surgery, due to the normal MRIs. According to my neurologist, the only time in which abnormal brain waves could be detected would be during an actual seizure while hooked up to an EEG. The logical next step would be to be admitted to the Epilepsy Monitoring Unit (EMU) for 24/7 monitoring and halt all medication in order to induce a seizure. Maureen had mentioned this was a possibility in last week’s post and this was the course of action we were hoping for. However, this is not as easy as it sounds and we learned from the neurologist that this is not the best course of action at this time.

Why Not?

I’ve experienced two seizures since starting the medication over the past 5 months. However, they  have decreased in frequency and severity. So the current medication is effective to a certain degree. Obviously we are shooting to be seizure free moving forward, but its not as simple as switching or halting medications. Even though my seizures are less severe they are still violent enough to cause fractures and other complications. Typically, when an epilepsy patient halts medication in order to induce a seizure for monitoring purposes, the seizures increase in severity and frequency; many times, even worse than before the patient started medication. This can be manageable if the patient has minor/manageable seizures, but for me in turns into a life-threatening situation. We were warned that halting medication for inducing a seizure would bring significant risk for grave injury, even paralysis. 

Additionally, even if we were to induce seizures for monitoring there is a likely chance that the only course of action following the monitoring would be to adjust my medication; which we are doing already. At this point, the reward simply does not justify the risk.

What’s Next?

Just because I am not a candidate for monitoring or surgery does not mean it’s not an option in the future. In addition to increasing the dosage of my current medication (Keppra) we are adding a secondary medication at night. We may be doing another brain MRI this week. 

We are hoping and praying that maybe this is the right formula for me. Epilepsy is so hard to treat because the magic formula for seizure free life is different for everyone and not always attainable for everyone. If I continue to have seizures we will likely continue EEG monitoring and brain MRIs on an as needed basis. Its possible that in the future something may be detected that could provide more information leading to a more specific course of action.

I plan to stay in St. Louis for the next week as I adjust to my new medication. I’ve been warned to take things slower than before as the secondary medication (valium) may bring additional side effects and result in a longer adjustment period.  Hopefully I can return to Kansas City sometime in the next 1-2 weeks.

At a Crossroads

Welcome back to the next blog post of Thriving Not Just Surviving. 

This one is written by Maureen so it may take on a different tone of writing but I will try to do what I can to keep with Greg’s impeccable writing. 

Catching Up

Monday, June 25^th around 10:25pm Greg had another seizure, despite the CPAP machine. We knew that the machine most likely wouldn’t completely eliminate the seizures, but we were hoping that it would help. Despite the seizure Monday, being on the CPAP machine for 10 days now, Greg has seen an improvement in quality of sleep.

This seizure makes episode number 4 and was much like the other ones with one main difference. I was told to take the CPAP machine off if he started to seize (it was more of a guess on their part, I think, as Greg is a special case). In doing this, Greg stopped breathing without the aid of the machine and his lips turned blue. As you can imagine, not only watching your husband have a seizure but now stop breathing and turn blue was a lot to handle. Thankfully, he started breathing on his own again and we waited out his post-seizure state until he was conscious again and I took him to the ER as we suspected he fractured his shoulder again. This was confirmed at the ER. He has an appointment with an orthopedic surgeon in St. Louis later this week to find next steps to care for that.

Instead of driving to STL right away, we stayed in KC for a few days (thank you so much to the friends who assisted in this!) We learned our neurologist was on vacation so we wouldn’t be able to get an appointment until the following week (this coming week). Wednesday night we did receive a phone call from our neurologist (a very kind man to take time of vacation) and we drove to STL Thursday for tests.

This test consisted of Greg being hooked up to an EEG for 24 hours to monitor the brain waves, and if he had a seizure to give them some information. This is an outpatient EEG you take it home, but you can’t shower for the duration and you look quite interesting, so going out in public isn’t very high on the list of things to do (pictures will accompany this post). After we arrived in town Thursday afternoon, Greg got this hooked up. This is lengthy process takes about an hour. Friday afternoon we went back to the hospital, got the wires removed and, on the drive back to his parents got a call that nothing had recorded for the last 24 hours and we had to come back Saturday morning to try it again. Not what you really want to hear when it’s 100 degrees out, with all of this equipment glued to your head and you can’t do anything or go anywhere for 24 hours. 

Where does that leave us?

Greg’s doctor bumped up his anti-seizure medicine to its maximum dose. There is always an adjustment period with the increase. So far, we are 6 days in to the adjustment and due to the high levels of medicine it has been difficult for Greg to fully adjust this time. He is taking it all in stride, I’m very proud of his perseverance and determination. We are hoping and praying that this week provides some clear paths for us. I don’t think anyone would be surprised that we are at a point where both Greg and I are both frustrated at the lack of “normalcy” in our lives. By the time we get back into a routine of being in KC together, him going into the office, PT, message and Chiropractic appointments scheduled, another seizure happens. When we meet with our neurologist this coming week we will be pushing for more aggressive measures to find some answers. One of these measures would include being admitted to the Epilepsy Monitoring Unit (EMU) at Barnes where Greg would be monitored 24 hours a day for up to 7 days. He would be removed from his medicine and seizures would be provoked to monitor the brain before, during and after the seizures to find answers and possible solutions. While this may sound very unpleasant, we are praying that this can become a reality very quickly. You know both Greg and I aren’t people to remain idle and we want to get to the bottom of this and find a more normal balance. Whether that is achieved by different medication, a combination of medications, or in rare instances, brain surgery to fix the problem.

We grateful for the continuous prayers and support you all provide. Please keep praying to Blessed Fr Solanus Casey for Greg’s complete healing of cancer and seizures.  

Here is the Solanus Casey prayer:

O God, I adore you. I give myself to You. May I be the person You want me to be, and may Your will be done in my life today. I thank You for the gifts you gave to Fr. Solanus. If it is Your will, bless us with the canonization of Fr Solanus, so that others may imitate and carry on Your love to all the poor and suffering in this world. As he joyfully accepted Your divine will, I ask You, according to Your will, to hear my prayer for Greg Fiudo, that he may be fully and completely healed of cancer and seizures through Jesus Christ our Lord.

Amen.

Adjusting to CPAP

Welcome back to the next Thriving not Just Surviving blog post. I’m very pleased to report that I received my CPAP machine and returned to Kansas City last Thursday afternoon. I’ve spent the last few days settling in and adjusting to the CPAP machine at night. So far, it’s going well.

It’s a pretty slick process. The CPAP machine has a hard drive and can transmit data over a cellular network to an app on my phone, which allows me to see different types of advanced sleep statistics. It also transmits data to a sleep therapist who can use the data to make recommendations for adjusting the air pressure and other settings on the machine. My doctor can also see this data and provide recommendations as well.

I’ve now used the machine for three nights and I’ve experienced a significant improvement in my quality of sleep. As you might remember, during the sleep study I was experiencing approximately 36 sleep apnea events per hour. With the CPAP machine that number has dropped to 5-8 events per hour. Although not perfect, I am starting to feel the benefits of an improved quality of sleep.

For the past few months I would normally have to sleep 10-12 hours on both Friday and Saturday nights. Additionally, I would also need to take a 3-4 hour nap on Sunday in order to recover for the upcoming work week. Its still early on, but I don’t feel the need to have that type of sleep regimen now that I’m on CPAP.

Despite the good results, its still weird to be under the age of 30 and be needing a CPAP machine. Apparently sleep apnea can affect anyone at any age. However, similar to lung cancer, most people appear to be at a later stage in life. I laughed as I read through the testimonials of sleep apnea patients using CPAP. According to them, I should now have the energy and confidence to do water aerobics, model trains, and puzzles.

Its great to be back and I’m thankful that my health appears to be much more stable. To be completely honest, its been an overall rough start to 2018. The significant impact of the seizures on my body as well as the unpredictability of their occurrence has definitely taken a toll. I think the toughest part has not been the physical impact, but the mental and emotional impact of being away from home for extended periods of time.

We are nearing the halfway point of 2018 (approximately 26 weeks). To date, I’ve spent 9 weeks total in Kansas City since the start of the year. That’s a staggering amount of time to be away. I was actually hesitant to count up the weeks because I knew it was a lot, but I think it’s a great illustration of what some patients who have to seek medical care in another city are faced with on a daily basis.

Moving forward, we will be working to establish a relationship with a neurologist in Kansas City. This will hopefully create some long-term stability even if the seizures return. However, all my cancer care will continue to be at Siteman Cancer Center in St. Louis.

Maureen and I continue to be blessed with the prayers and support from all the communities in our lives. We cannot thank you all enough.

Waiting For CPAP

Welcome back to the next Thriving not Just Surviving blog post. I decided to take a few weeks off from posting because there hasn’t been much to report. Its been a slow process waiting for the official results of the sleep study that was conducted at the end of May.

Fortunately, I received the results a few days ago and we will be moving forward with acquiring a CPAP machine to treat my severe sleep apnea. The official results reaffirmed what we already knew. It was noted that I average 35.9 sleep apneas every hour; meaning that I stop breathing for at least 10 seconds 35 times in a single hour. The excessive amount of sleep apneas cause my oxygen level to drop below 86% during sleep. Lack of oxygen can lead to a host of other medical problems including: heart attack, stroke, brain damage, and even seizures.

As I stated in my previous post from a few weeks ago, this is good news because it could explain the seizures and at the very least should improve my quality of life. The informal research that I’ve conducted found that there is a reciprocal relationship between sleep apnea and epilepsy. Some epilepsy patients develop sleep apnea from the anti-seizure medication they take. Apparently the medication can over-relax the muscles in the back of the throat and cause the airway to narrow during sleep, resulting in sleep apnea. The sleep apnea then exacerbates the seizures from the reduction in oxygen levels and excessive fatigue. Other research found that many people with primarily nocturnal seizures were able to successfully eliminate them after starting CPAP. Its impossible to know how it will impact my situation, but I hope six months from now we can look back and point to this diagnosis as the key in the elimination of the seizures.

We are currently waiting for the insurance company to approve the purchase of the CPAP machine. Hopefully they call in the next few days and I can receive the machine by the end of the week. If everything goes according to plan, I could be back in Kansas City at this time next week. However, past experiences have prepared me to accept that the process could be a bit slower.

Sleep Apnea

Welcome back to the next Thriving not Just Surviving blog post. It’s been a particularly productive week. On Wednesday, we met with the sleep specialist who fast-tracked the sleep study to Friday night. I didn’t expect the study to happen this quickly, but I’m very glad to have already completed it.

Sleep Study Purpose
The primary diagnosis that a sleep study determines is sleep apnea. Sleep apnea is a condition in which a person’s breathing repeatedly stops and starts. This is attributed to the airways, primarily in the throat, closing or narrowing. Its potentially serious and can trigger other serious issues including: heart attack, stroke, oxygen deprivation, and sometimes even seizures.

I’m not the stereotypical patient for sleep apnea because I am still young and not overweight. However, I have exhibited many of the symptoms including excessive fatigue throughout the day, headaches after waking up, choking when sleeping, and snoring. My neurologist also believes that sleep apnea could be increasing the chances of having seizures, due oxygen deprivation during sleep and the excessive fatigue.

Preparing for the Sleep Study
I arrived at the hospital on Friday evening and met with the sleep technologist who began hooking me up to various sensors. The main component of the sleep study is the polysomnogram which records brain activity, eye movements, heart rate, blood pressure, oxygen levels, body movement, and more. This included a host of electrodes attached to my face, chest, arms, and legs. I also had sensors under my nose and around my mouth to monitor airflow.

Since I’m an epilepsy patient, they also used an electroencephalogram (EEG). This is a test that detects electrical activity in your brain using small, metal discs (electrodes) attached to the scalp. Brain cells communicate via electrical impulses and are active all the time, even when you're asleep. This test is used in a variety of ways to identify brain activity related to seizures.

Beginning the Sleep Study

I went to bed around and 10 p.m. and the sleep technologist began monitoring me on the EEG, polysomnogram, and by video camera. It was hard to fall asleep due to all of the electrodes, but I fell asleep sometime around 11 p.m. At 1 a.m. the sleep technologist woke me up and informed me that I failed the test due to severe sleep apnea and that they were going to start administering Continuous Positive Airway Pressure (CPAP).  This is the primary treatment for severe sleep apnea.

It was difficult to fall asleep as I was trying to adjust to the CPAP mask, but sleep eventually came and I finished the rest of the test. I was awakened at 6 a.m. on Saturday and was informed that I had over 30 sleep apnea occurrences per hour during the first two hours of the test. This means that I stopped breathing for at least 10 seconds 30 times in a single hour. Its standard protocol for the sleep technologist to begin CPAP if the patient has at least 5 sleep apnea occurrences during the first two hours. In summation, I have very severe sleep apnea that is most likely significantly impacting my quality of life and potentially a contributing cause of the seizures.

Next Steps
The results are still considered unofficial and a pulmonologist, neurologist, and sleep specialist will analyze the test results from the EEG and polysomnogram, but it is expected that CPAP will be the treatment recommended for my diagnosis. This is very good news because it could explain the seizures and at the very least should improve my quality of life. If left undiagnosed, it could cause more serious issues later in life.

I still have many questions surrounding the sleep apnea and the relation to the seizures and even lung cancer. I’m hoping that the EEG and polysomnogram can shed some light on these topics. I was told that it could be up to two weeks for the test results to be published. The plan over the next few weeks is to manage the sleep apnea as best I can and hope the results come back soon so I can obtain a CPAP machine as soon as possible. I’ve rambled enough for now so I am going to hold off for at least one more week on the lung cancer discussion. I hope everyone has a great Memorial Day weekend.

A Seizure Relapse

Welcome back to the next Thriving not Just Surviving blog post. Unfortunately, it’s been a rough past week. At approximately 4:00 a.m. on Sunday, May 13 I experienced another gran mal seizure. This seizure was not as severe as the previous occurrences, but I was still taken to the emergency room to ensure no significant injuries occurred. Maureen and I returned to St. Louis later in the day to reconvene with my team of doctors.

The most significant injury concern was my right shoulder which was nearly healed from the previous round of seizures. Fortunately, numerous x-rays showed no further structural damage and the pain is primarily attributed to a muscle strain. I’ve been using the sling again to protect it, but I don’t expect to use the sling long term. My anti-seizure medication has been increased in hopes of preventing any further seizures. 

The big unanswered question continues to be, "What is the cause of these seizures?". We have already completed the necessary medical tests and those have revealed nothing informative. However, this additional seizure does gives us a better opportunity to look at common trends and factors surrounding each of the five seizures. Our neurologist believes that it is potentially important that four of the five seizures have occurred during sleep. As a result, we are looking to schedule a sleep study in the very near future. This will involve me spending the night at a sleep center and undergo continuous monitoring of my brain, breathing, and other vital signs throughout the night. This would look to see if something abnormal is occurring with my brain that might help us better identify a cause. There is the potential that sleep apnea could be contributing a contributing factor to the seizures.

The best piece of news from the week was that my Chest CT scan revealed the remaining tumor in my right lung was stable in size compared to previous scans dating back to October 2017. This scan was originally scheduled for the fourth week in May, but we pushed up the test since I was already in St. Louis for the seizures. There is the potential for some exciting news on the cancer front, but I’m going to hold off on discussing anything further for at least another week.

The last week has been particularly trying. I was starting to settle in to a more regular routine of daily life and it appeared that the anti-seizure medication was going to work for the long term. As discouraging as it is to “return to the drawing board” regarding the seizures, I am hoping there is a chance to identify the primary cause that would dictate a treatment plan that does not involve taking anti-seizure medication for the rest of my life.

I plan to stay in St. Louis for at least the next few weeks so that I can undergo the sleep study. We meet with the sleep specialist on Wednesday and hopefully the study gets scheduled soon after. I plan to post again next week with an update from the sleep specialist as well as discuss some exciting developments on the lung cancer front.

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.