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!