Special Announcement

Moving forward all blog posts will be in video format on my YouTube Channel (Thriving on Tech)

Here is a link to the Channel: 

https://www.youtube.com/channel/UCNL9OGjmD3UA8AgT30Kd1TA

Here is a link to the first health update video:

https://www.youtube.com/watch?v=pPOy6cWI9xs

 

Thanks for watching and reading!!

Beginning 2021 with a Great Scan!!

Welcome back to the next Thriving not Just surviving post. I (Greg) am back and looking to start 2021 on a positive note. 

In November I began a clinical trial in response the growth of cancer in my neck and lungs. This is the first time I've participated a trial and its been interesting to learn about all the protocols involved with a clinical trial including: keeping a medical diary, reconciling pill counts, additional bloodwork, and a whole lot of paperwork. Currently, the clinical trial has had very promising results with patients experiencing significant periods of progression free survival.  

Last week I underwent my first scan since starting the drug and the majority of the cancer is gone! Most of the lymph nodes have returned to normal size and the visible lymph node on my neck is completely gone. As you can imagine, this was a breath of fresh air from the past few months. I appreciate everyone's prayers. As with most target therapies, I will continue to take this drug until the cancer returns.

Additionally, my seizure medication has been overhauled. In November I made the decision to switch my primary seizure medication due to increasing severity of side effects and a potential risky interaction with my cancer treatment. So far the new drug is working and I do feel more energetic. Maureen and I are hoping and praying that this drug continues to be effective in keeping the seizures under control. 

My Youtube channel continues to be a work in progress, but Maureen and I have upgraded some of our recording equipment and quality should continue to improve. If you haven't checked it out I welcome you to subscribe to the channel HERE and view the latest VIDEO. I hope this latest topic is of interest to most people. 

Thanks again for the prayers and support. Maureen and I continue to be blessed and we look forward to a great 2021.

A Rough Week and a Positive Launch

 Welcome back to the next Thriving Not Just surviving blog post!

    This is written by Maureen as Greg is still recovering. Last week was supposed to be a week "normal" week, with a routine scan and follow up with Greg's oncologist. Wednesday Greg went in for his 4-month chest scan, a routine scan to check on the cancer. For the last year he has gone every 3 months with stable results and we were excited to "graduate" to 4 months. On Thursday we had a follow up scheduled with his oncologist to check in and find out the results. 

    Wednesday evening Greg was walking Penny (our Beagle puppy) by our town home and had a seizure on the sidewalk. I wasn't at home at the time and received the call that he had a seizure and was being loaded into an ambulance and taken to the hospital. My world was rocked. It always is. It doesn't matter how many times we've been through this; it is always devastating and hard to process. The next few hours passed as he was transferred and I waited to be admitted to the ER to see him (COVID rules required I wait). He didn't have another seizure, which is always our primary concern and he didn't injure his shoulder which is our secondary concern He had scrapes on his head and his knuckles were bloody and torn up from his seizure on the sidewalk. A CT scan of his head showed that he didn't have a concussion or bleeding in the brain, thankfully. We were discharged around 11pm to rest and sort through what had just happened. 

    We had the oncology appointment scheduled for the next day, and we were trying to figure out if Greg could make it to the appointment. Post seizure, it takes a few days for Greg's head to clear, for him to sleep it off, and for his body to recover from the excruciating muscle pain due to the violent contractions. Greg was able to attend his appointment. We were hoping the appointment would only be about 60 minutes so he could return home and rest. The appointment was over 2.5 hours. His doctor closely listened to the details of the previous 16 hours, I could tell he was quite concerned. He went on to say explain that Greg's scan indicated that the cancer was growing as shown in the lymph nodes in his chest that were enlarged. He suggested we start treatment. Since we had previously discussed what our next treatment options would be when the cancer started growing again it was a simple decision. (Simple not easy). with Greg's cancer it is not "if" the cancer starts growing again, it is "when".  We have always known this, we have been through this before, but it is always hard to hear, always hard to process. I'm sure the previous 24 hours' events did not help my already fragile emotions hear what was being said by the oncologist as we began discussing treatment. 

    Upon physical examination from his doctor (listening to his heart, lungs and checking the lymph nodes for swelling) the doctor found an enlarged lymph node in the neck that was not caught on the chest scan. The chest scan stops at the neck and this lymph node sat higher, in the neck area. This lymph node, which will be biopsied and a brain  MRI will hopefully give us more information.

    At this time, a clinical trial is what we are pursuing for treatment. It it a targeted treatment, which means it "targets" the specific "RET" mutation in the cancer, instead of killing everything like chemo does. Greg's mutation is rare and we haven't had the opportunity to have this type of treatment before. We hope to know more in the coming weeks as Greg has more tests done and hopefully start treatment soon.   

    On a positive note, Greg's long-awaited YouTube channel has launched! Click here! Please like, subscribe and share! It has been a labor of love. It has provided him with such a positive focus over the last few months as he has shot many content videos. His is the genius behind the content and I am the editor! We enjoy being able to collaborate on this project! It is Greg's hope that his channel can reach many audience. He wants to reach those who have an interest in computers and technology. He hopes to reach other cancer and epilepsy patients struggling with daily life, medications and diagnoses.  He will shed light on how technology assists in the medical field. 

    Thank you for your outpouring of love and support. Keep it coming. Know of our prayers for all of you, to keep healthy and safe and connected to those you love.

I'm Back

Well, I'm back. Its been quite a long ride since my last post. A very special thanks to Maureen who did a fantastic job writing the last several posts over the last year or so.

A few weeks ago I underwent my quarterly chest CT scan which revealed stable results once again. The small tumor and enlarged lymph nodes remain unchanged in size. So we'll continue our plan to monitor the cancer on a recurring basis. I asked my oncologist when he thinks I'll need to resume treatment again and he simply smiled and said, "You keep making me look like a liar and we should ride this out for as long as possible." Simply put, it's impossible to know when the cancer will start to grow again. However, we now have an FDA approved targeted therapy as well as several clinical trials in our arsenal to try should I need to resume treatment. Its amazing what a year makes in the world of cancer research.

I did have a seizure back in February. Almost exactly a year since my previous seizure. This is progress for me. My neurologist has already told me that I probably won't ever have complete control over my seizures; despite being on two very high dose seizure medications. The biggest challenge over the last year or so has been dealing with the daily seizure medication regimen. Extreme fatigue, depression, reduced mental cognition/memory are just some of the side effects that I've been battling.

I was hospitalized for extreme depression in March for a few days and I took a month long absence from work. I returned to work for two months (in April and May) before deciding to go back out on medical leave for an indefinite amount of time. The main reason was due to the side effects from my seizure medication that I mentioned above and also trying to maintain an acceptable quality of life. We'll see what the future holds. 

On a more exciting note, I am starting my own YouTube channel. This is something I've never considered until recently. Its going to be centered around computer technology, which has always been a passion of mine. However, I also want to focus on what advancements in technology are helping advance medical research and intertwine some of my medical experiences in dealing with serious medical illnesses within the videos. I hope that this is something that not only others can benefit from, but myself as well. I don't have any detailed grand plans, but I'm passionate about it and we'll see where it goes. I'll be sure to post again when the channel launches in the next few weeks. 

That's it for now. I'll be looking forward to sharing more again soon! 

Service Dog Update

Dear friends and family,

Many of you have been asking how the fundraising for our service dog is going. Last week we found out that Service Dogs by Warren Retrievers (SDWR) is bankrupt and took our money. In late May we noticed that donors could not access our site and that our campaign was shut down. This was after just 2.5 months of fundraising and halfway to our goal of $25,000 with $13,000 raised. We immediately reached out to SDWR, only to have our emails returned and phone messages never answered. This company has been around for years and has given many trained dogs to good homes. A Facebook group was created of all the families who are in our situation as well, having raised part or all of the money without receiving a dog. Other families who have received well trained dogs are also in the group, sharing their positive stories and affirming that this was a reputable company, at one time. We all have joined together and are fighting for justice to be done. The FBI is aware and we have submitted a complaint with the State Attorney General in Virginia. We are doing all we can to get the money back in the correct hands. We know these things can take time to be resolved and do not expect it to be resolved immediately but we will continue to fight. If you, or someone you know is well-versed in Bankruptcy law, please reach out. We are learning as we’re going and just trying to hold them accountable. Thank you, from the bottom of our hearts, for supporting us and our dream to get a service dog for Greg. We feel that it was our duty to be good stewards of your generous donations and have failed you. We thank you for your continued support and your prayers.

Greg and Maureen

Isolation, nothing new for Greg

This is Maureen writing today, Greg wouldn’t probably share this, but I will. I share this here, because he often keeps so much in, but I think it needs to be shared.

Last night Greg asked me how I was dealing with the “whole thing”. I replied “okay”. It is the conclusion of my spring break and last week I needed (and got) sleep and rest! Greg replied that nothing has changed for him, except that I am now home all the time and that is an adjustment for him.

This got me thinking, and thinking.

Nothing has changed for him. The last 9 months, since we’ve lived on our own again (but really 2 years since losing the ability to drive and drink alcohol), Greg has been isolated. To paint the picture of the last 9 months: He works remotely, does everyone see the challenge with that now? It’s not sunshine and rainbows as one might initially think. He cannot drive. So, on “lunch hour” he can’t go grab lunch and get a little social/people time. He can’t quick run an errand to pick up an ingredient for dinner, or even go get an ice cream or a beer after a long day. He can’t drive himself to the gym for a morning, lunch, or after work workout.

This may sound like an extra, and I know some people do not have the luxury to go on vacations. We saved and saved and paid off our school debt before we were even considering taking a vacation. The month after we paid off our debt, he was diagnosed with cancer, then the epilepsy… So, in the last few years, we have had to cancel multiple vacations. We had a trip to Europe planned, we had to cancel it. Then we decided to go all out and take our dream trip to Hawaii, we had to cancel it due to his seizures occurring more frequently. Finally, last June we were able to go to Florida with his family. It’s hard when you CAN’T go on a vacation, when you’ve saved and planned and it’s not even a choice.

To add to his already isolating situation, I have been working as a substitute since September. There are times when yes, I work the bare minimum time clock in, clock out, and take an occasional day or half day off. However, since January I have been in a full-time substitute position, going early, staying late, and not getting days off- which has furthered Greg’s isolation.

Nothing has changed for Greg.

The world is now starting to experience what he lives with.

NOW to the isolation, add Lung Cancer (continues to be stable praise God), Seizures, and high levels of medication to hopefully keep the seizures from happening. Try having hours of phone conversations on speaker phone- yes try it, and tell me if you don’t get a migraine.

Enter severe, chronic migraines to the picture.

When these really started ramping up, in December, Greg was unable to make it through a church service (for us, Catholic Mass), which is only an hour long. For four months, he hasn’t been able to join his faith community in worship. It is hard to worship at home, by yourself, but he has, for four months.  

I know, I haven’t really gotten the full picture of isolation until now. I have lived with its effects yes, and he is a trooper. He clings and hangs in there longer than many would. So many of these things led to his hospitalization a few weeks ago. He is doing so much better so far. We continue to pray.

The ironic thing in ALL of this. Now he’s ready for socialization. Now he’s ready to volunteer, to meet other people in his situation or other challenging situations and the world is having to isolate.

I don’t share this to complain. I don’t share this to say, just stay home and do as you’re told (oh wait, yes I do, so this can all be over faster). Really. Honestly, I share this, so that you can think of all of those that live in isolation- chosen or otherwise. The elderly, those struggling with mental illness, those with illness such that their immune system doesn’t allow them to go out, those with so many medical issues, like Greg, who are young and want somewhat of a “normal” life.

I wanted to let you in.

Be smart, stay home, stay safe and find the good right now, for you this will end but for some it won’t.

Trying To Thrive Not Just Survive

Welcome back to the next Thriving Not Just Surviving post, 

This post has two VERY different parts. I am going to give a recap to help fully understand so please stick with me (this is Maureen by the way).

We just passed three years from his initial cancer diagnosis. That diagnosis alone was a lot, bleak and he conquered it taking Thriving Not Just Surviving as an inspiration to keep fighting for a better life. One year after that diagnosis, he had a seizure which lead to an Epilepsy diagnosis and that part of our challenging journey through uncontrolled seizures for a time, medication changes and hospitalizations with an extensive surgery to save his shoulder. We left our “home” and moved across the state to be close to his doctors and have family support. In December he was diagnosed with severe and chronic migraines and has since battled a few viral things, shingles being one of them. During this time, he hasn’t been able to drive since February 2018, works remotely and hasn’t been able to exercise as he used to.

Through all of this Greg has continued to press on, taking each new thing and pushing on. He is a private person and has struggled to find a therapist/counselor whom he connects with. He has carried all of this.

On Wednesday, Greg willingly went to the hospital for a “Behavioral Risk Assessment”. You speak with a counselor and they determine if you’d benefit from an inpatient stay with full medical support to address emotional, mental, physical needs. Greg was admitted and he has been staying at a local hospital on their “Behavioral Health Unit”. We are not sure how long his stay will be, but don’t anticipate it being that long. We pray that he can be in a better mental and emotional state when he is discharged and can get back to the Thriving part that has always been so important to him.

On a different note, before the above occurred, we applied and were accepted to receive a seizure response service dog! We feel this will be an extra way to provide Greg with freedom, safely and peace of mind! A seizure response dog does not prevent seizures but is HIGHLY trained to assist him in the event of a seizure. They can pull him to safety (if he’s outside, on a hard surface, etc..) as well as bring medication, get immediate assistance and more. We have chosen a program that provides extensive training for the dog and us, as well as a program that comes right to us so we don’t have to travel. The training is ongoing and with someone like Greg whose health changes, we thought this was important! We are fundraising to meet the financial need and invite you to visit our page. If you are able to financially support us, we would be grateful. If you are not, please pray for us and please pass on this information! The process usually takes about 9-12 months but we’d like to raise the money as fast as we can!

Service Dog Link https://tinyurl.com/Not-Just-Surviving

We have received so much support from our communities and are so grateful you’ve walked this journey with us. None of us know where our path leads, and we know each and every one of you have your own challenges in your life. We are just grateful you continue to remain as part of our support system in so many different ways.

Here is a picture from when Greg was first diagnosed and he came up with Thriving Not Just Surviving- this is a good reminder of the hope we had. 

 Here is a picture from last summer, and a favorite for both of us.

Know that you are in our prayers and please, please pray that Greg and I can both get to a place of thriving instead of surviving.

January 2020 Update

Welcome to the next Thriving Not Just Surviving blog post!

This is written by Maureen. :)
We pray you had a good holiday! In December Greg underwent his check-up chest scan that occurs every three months. It was all good news- his chest scan remained stable- no growth or change. They added a brain scan as well- it was clean with no signs of abnormality! 

Also, in December, Greg had his two-month check in with his Neurologist. He remains seizure free- praise God! Based on some recurring symptoms Greg had been experiencing, his neurologist diagnosed him with severe and chronic migraines. They still occur most days but we are hoping a new medication he is on will help- it can take two months to know if it’s working and we are still in that initial waiting period. 

Some of the concerns addressed at his many December appointments were about his processing and cognition, which had seemed to be decreasing. His Oncologist prescribed Speech Therapy. Speech therapists address many areas in addition to speech, including memory, problem-solving, attention, and processing speed, just to name a few. There is an amazing program called ReVital Cancer Rehabilitation. Greg’s sister, Audrey, is a ReVital-certified occupational therapist, and she shared this to better explain what ReVital is:

ReVital Cancer Rehabilitation is a national association and network of certified physicians, nurses, therapists, and other healthcare professionals that are dedicated to helping cancer survivors “live well beyond cancer”. This means something different for every single person, but ultimately, the goals are to improve daily function and overall quality of life. Physical therapy, occupational therapy, and speech therapy (one or all of these disciplines, depending on the needs of the individual) can assist in remediating, compensating, and mitigating the physical and mental effects of cancer and cancer treatment. Cancer survivors have already been through an incredible amount of suffering and pain, and they deserve to live the full, rich lives they want to live. Specialized, skilled therapy interventions can (and do) help make this a reality. 

As I was doing research on ReVital, I came across a familiar “slogan” on their website- it even says that the therapists want to help people thrive, not just survive!! It’s not just a slogan for us, but something that gives me hope and keeps me fighting when I know I need to be heard. When Greg met with the speech therapist, he went through initial screening to test his levels of processing and see his strengths as well as areas to focus on in his sessions. Two areas of concern emerged. 

In the Attention category, Greg scored at the .1 percentile. In the Memory category he scored at the 10^th percentile. These results supported some of the processing and cognition changes I had seen. Knowing this allows his therapist to help him with strategies to overcome these deficiencies and raise those numbers by the end of his therapy. We do not have a specific cause of his lower processing in those areas, but with the six months of Chemotherapy, being on a high dose of seizure medication for an extended time, being on pain medication for an extended period of time, and suffering from migraines (that we didn’t even know were there) could all be contributing factors. I am glad we did not have to add another medicine or drug or just ignore what was happening. I’m so thankful to give Greg the tools to help him. 

We appreciate the continued prayers!

A Long Awaited Update

Welcome to the next Thriving Not Just Surviving blog post. This post is written by Maureen, it has been a while so I will provide an update on everything. 


If you remember, Greg began chemo in February 2019. After enduring the chemo for 8 rounds, at the end of July, the doctor decided to give his body a break to recover. At this point he had been experiencing extreme fatigue. After two stable scans and no signs of growth, the doctor decided to end Greg’s chemo treatments for the time being. The plan is to scan every three months to watch the tumor and lymph nodes for any changes. If things start to grow or change a new treatment will be started. In the meantime, Greg is off treatment.


Greg has remained seizure free, praise God! He has been meeting with his neurologist every two months and we are continuing to find the best medication regimen. The doses of medicine remain high and Greg is working through the sedating effects.

Through all of this, Greg continues to work remotely.  He logs time when he can and takes naps as needed to give his body the rest and recuperation it needs. The doctor said the chemo effects can persist through six months after treatment has stopped. He stopped treatment at the end of July, but the fatigue and nausea linger.



Thank you for the continued prayers.

Positive Results but a Long Journey Ahead

Welcome to the next Thriving not Just Surviving Blog post. This past week I underwent another CT scan to monitor the progress of the last 4 rounds of the 2 drug chemotherapy regimen. This time the scan revealed that several of the enlarged lymph nodes were slightly shrunken in size and the others remained stable. So this is encouraging progress. 

Now that I have completed the initial four rounds using the 2 drugs my oncologist wants to continue with a single chemotherapy drug (Pemetrexed) for the long term. In this case the "long term" means up to two years or until the cancer stops responding. Right now it's hard to wrap my mind around receiving a chemotherapy infusion every three weeks for the next few years, but such is the life of a stage four cancer patient. The goal is to get the "best bang for your buck" out of each treatment option before moving on to the next. 

Additionally, our only other option is the clinical trial that I had briefly mentioned in a previous post. This option is still available, but its only a phase 1 trial and there is little information regarding its efficacy at this point. If my current regimen stops working we will move to this trial, but for now we plan to move forward as discussed with the chemotherapy. However, as with all things medical, everything is very fluid and there are constantly new advances being made every month that could impact our plan.

We also met with the neurologist and made adjusted adjustments to some of my secondary seizure medications that were interacting adversely with the anti-nausea medication. It's been a constant battle trying to balance the use of anti-nausea and anti-seizure medications at the same time because they both work similarly on the brain. I would not wish epilepsy and stage 4 cancer on my worst enemy, as the side effects have continued to worsen with each round of cancer treatment. 

As always, Maureen and I continue to be thankful for the prayers and support from everyone and will continue to share our journey that God has given us. 

Cancer Update and a Seizure Diagnosis

Welcome back to the next Thriving Not Just Surviving blog post. This post will be a little longer as I will recap the last month of appointments concerning the cancer and seizures. I hope this provides some information to clarify what has been going on as I haven’t posted for a few weeks.

Cancer
Round 2 of chemotherapy was successfully completed approximately three weeks ago and I received round 3 this past Thursday. Additionally, this past week I underwent my first chest CT scan since starting chemotherapy treatment to determine its effectiveness. The scan showed the three enlarged lymph nodes to be stable in size; meaning that nothing shrunk, grew, or spread. While I would categorize these results as good and not great, I am still thankful to have a very limited amount of cancer remaining in my body.

My oncologist said that we will continue to complete the fourth round with the two current chemotherapy drugs and rescan. If the scan continues to shows stable results, he will continue the regimen with only a single drug. If the cancer grows or spreads, he’ll switch over to a clinical trial.

Now that I’ve had three rounds of the 2-drug chemo combination the side effects are more noticeable including fatigue, nausea, body pains, and headaches. Additionally, my blood counts have started to drop slightly and my liver enzymes are slightly elevated. My oncologist said its quite possible that my anti-seizure meds are exacerbating the side effects. I’m doing whatever I can to balance work, rest, and life. So far, it’s been fairly manageable, but I expect it to be more difficult moving forward.



Seizures
Since my seizures started over a year ago, we’ve been on a wild goose chase to determine what is the overall cause of the seizures. As a review, the primary possible causes of the seizures included: nonepileptic, autoimmune, and traditional adult onset epilepsy. I’ve provided a description below as well as our evidence and our final determined cause of the seizures.

1.       Nonepileptic Seizures – These are not true seizures and are psychotic events caused by trauma (such as a terminal diagnosis) and often present themselves as a grand mal seizure in which the patient stiffens and jerks. Traditional anti-seizure meds do not have any effect and the episodes occur without pattern. No abnormal brain activity occurs during a nonepileptic seizure.

a.       As you can see based on the description some of these symptoms align with my situation. However, once we were able to obtain a video recording of my seizure our epileptologist was able to study the video and look at my stiffening, movement, and breathing. He conclusively ruled that my seizures were epileptic. Therefore, we have eliminated nonepileptic seizures from our list of causes.

2.       Autoimmune – An autoimmune response could have explained a cause for the seizures as well. This could have been from the immunotherapy treatment as well as from the actual cancer. The immunotherapy drug could have caused my immune system to go haywire and attack a certain portion of the brain resulting in a seizure. Even without the immunotherapy drug some cancer patients experience what is referred to as paraneoplastic syndrome in which the immune system also goes haywire and can attack certain organs including the brain which could have resulted in the seizures.

a.       At the time of my first seizure this was one of the most likely causes that was considered. I underwent two different lumbar punctures 6 months apart to look for biomarkers in the cerebral spinal fluid that would indicate an autoimmune issue. Both tests came back negative. Additionally, it’s been 18 months since the immunotherapy drug was discontinued and if that was the cause, the seizures should have stopped. The final piece of evidence that ruled autoimmunity out had to do with the last seizure that occurred in February. When I received my first round of chemotherapy they started me on a dose of oral steroids and gave me a high dose intravenously as well. Steroids are the main form of treatment for autoimmunity issues in the brain. If autoimmunity was causing the seizures this would be the time for seizures to not occur.

3.       Traditional Adult Onset Epilepsy – Now that I’ve gotten to the end of the list of potential causes it pretty easy to assume that this is what has been concluded. However, its important to know that it’s not just because we eliminated the other causes, but also because there is a preponderance of evidence that supports Adult onset Epilepsy as the diagnosis.

a.       From my limited research I’ve found that about 30-40% of all epilepsy is genetic; meaning that its inherited from family members or relatives. Epilepsy does occur on my father’s side of my family and both cases were adult onset. Additionally, throughout the past year it may seem that there was no pattern to my seizures and they seemed to happen at random. Only part of this is true now that I had the seizure in February 2019. There is something referred to as drug resistant epilepsy. This epilepsy occurs when it’s very difficult to find medication to effectively treat seizures for an extended period of time. Many times when the patient first begins the medication regimen the medication appears to work (the honeymoon period). My first honey moon period was nearly three months last spring. It appeared that the first medication we tried stopped my seizures and I was able to return to the office. However, after three months I had another seizure so my neurologist increased the dosage. I went another 6-8 weeks without a seizure and then experienced a more severe seizure. We added a secondary medication and then from that point on I averaged a seizure every month or less with increasing severity (despite increasing the medicine dosages), ultimately permanently dislocating my shoulder which required an emergency surgery. The sliver lining is that after the seizure that dislocated the shoulder my neurologist switched to a completely new medication and the “honeymoon” period lasted 4 months allowing my shoulder to fully heal. None of the other potential causes would have this type of pattern. It would be extremely ironic and when combined with the other evidence it makes for a solid diagnosis.

We are not sure the frequency and severity of the seizures in the future, but we are glad to have arrived at a conclusion for the cause of the seizures. We are not going to stop seeking positive steps toward living with the seizures (more effective medicine with less side effects, potential surgery, less severe seizures etc..). We thank you for your continued prayers and support. Even though we are in St. Louis, we still feel your presence and appreciate your support from people all over the world.

Recapping the Seizures

Welcome back to the next Thriving Not Just Surviving Blog post.

I was hoping to use this post to briefly highlight the completion of round 1 of chemotherapy on February 7. It is true that I did complete round 1. However, on the evening of Saturday, February 9 I experienced 3 seizures as I was going to bed.

After laying down in bed I experienced an aura which is what a seizure patient sometimes experiences right before a seizure. For me it’s usually a déjà vu feeling, mind racing, and a familiar music or song playing through my mind. Overall, the aura can be very hard to describe, but it’s very important because it can help a seizure patient get to a safe place before the seizure occurs. In this situation it allowed me a few extra seconds to pull off my CPAP mask and lay back in bed before the minute-long seizure occurred.

After the first seizure ended there was a 15 second break and I experienced another 30 second seizure. With the help of my parents, Maureen was able to keep me from injuring myself during the seizures while my dad called the ambulance and my mom filmed the seizures. Ever since we were unable to record a seizure in the Epilepsy Monitoring Unit (EMU) our neurologist, who is also a trained epileptologist, has been wanting for us to record one of my seizures. A trained epileptologist can sometimes look at a video of a seizure and determine if the cause is epileptic or some other cause. We’re hoping that the videos we have will be good enough to make a determination.  

When I arrived at the hospital, they did a CT scan of my head and right after the scan I experienced another minute-long seizure. I struggled to breath during this seizure so they fitted me with an oxygen mask and moved me to the ICU where I spent the night. On Sunday I they performed a full brain MRI and I was seen by the neurologist who was working at the hospital. The MRI did not show any evidence of cancer or structural abnormalities that would have caused the seizures. These results were consistent with every other brain MRI I’ve undergone. On Monday I was discharged from the hospital.

It’s worth nothing that it had been 4 months to the day since my last round of seizures. It’s quite an accomplishment to make it 4 months between seizures, but it’s equally as frustrating. The silver lining is that these seizures were not nearly as severe. My shoulder did not sustain any damage and I am resuming my physical therapy this week.

We still don’t have a definitive answer yet to the cause of these seizures that have now been occurring for over a year now, but I think we are getting very close. That being said, I expect to continue with round 2 of chemotherapy on Thursday, February 28.  

Beginning Treatment

Maureen and I finally received the highly anticipated genomic testing results. As it seems with most of my medical tests, the results were a “mixed bag”. We did similar testing when I was first diagnosed two years ago and we completely “struck out” regarding eligibility for a targeted therapy for my specific cancer mutation. Fast forward to today and the best analogy I can give is that we reached first base on an infield error.

More specifically, the mutation that came back in the test results does not have an effective approved targeted therapy. There are a few clinical trials that are in the early phases related to this mutation and only one of them appears to be promising. This clinical trial is currently considered an “investigational” drug and has very stringent eligibility requirements. One of the requirements is that the patient has to have already undergone standard chemotherapy, which I have not had.

Therefore, Maureen and I have decided with the advice of our oncologist to do several rounds of standard chemotherapy and see how it goes. The scheduled chemotherapy regimen includes two drugs infused every three weeks. The plan is to do at least 4 rounds and rescan before the third round.

Fortunately, we caught the cancer early so there is a good chance the chemotherapy knocks out the cancer. The best-case scenario is to be cancer free after the chemotherapy regimen and also then be eligible for the clinical trial should the cancer return.

The first infusion is scheduled for Thursday, February 7. At this point, I’ve known about the cancer returning for over a month; so, I’m just ready to begin treatment and start fighting again. I know there will be side effects and the potential of increasing my seizure risk. However, I’m confident that my body will rebound as it has with every challenge over the past two years and I will continue with daily life as much as possible.

Preparing to Fight a Familiar Enemy

Welcome back to the next Thriving Not Just Surviving Blog post. I am pleased to announce that I (Greg) am back to writing the posts. I am very grateful for Maureen’s fantastic job at writing the last few posts. As a warning, I haven’t written in a while so I’ve got a few months of “cabin fever blogging” built up so it’s going to result in a longer than usual post. I hope you are ready for it 😊.


Its been a crazy past few months with the transition to St. Louis, shoulder surgery, adjusting to new seizure meds, and starting physical therapy. On a positive note, my shoulder is continuing to heal and I began physical therapy at the end of December. Its also been over 3 months since my last seizure, which is by far the longest seizure-free period I’ve experienced since the seizures started nearly a year ago.

Despite all this good news the primary reason for this post is that after running a variety of tests we recently determined that my lung cancer has returned. I know this may sound crazy considering we stated that my scan in December showed stable results. So, I will elaborate further.

Over the past few scans we detected activity in my lymph nodes. A July scan detected a few very slightly enlarged lymph nodes. They were barely larger than normal so my oncologist decided to wait and rescan in September. The September scan revealed the previously enlarged lymph nodes to be shrunken back to normal size, but different lymph nodes were enlarged. In most cases this does not represent cancerous activity, but the body struggling to fight infection. The December scan revealed a similar type scenario, but with more lymph nodes enlarged and larger in size than previous scans. Throughout all these scans the tumor in my right lung remain unchanged, indicating stable results. At the end of December, they biopsied one of the lymph nodes in which they take actual tissue from the lymph nodes and test it to determine if the cells are cancerous. This is by far the most conclusive test that can be done. As you might expect, the test came back positive for cancer.

What Does This Mean?
The silver lining is that we did catch the cancer early. As of December, the cancer was characterized as slow growing. It also means that the tumor that we had been monitoring since discontinuing treatment in August 2017 most likely was not cancerous and simply left-over scar tissue from the golf ball size tumor that appeared at the initial diagnosis. If it was cancerous, it most likely would also be growing along with the lymph nodes.

My oncologist has now submitted the biopsy tissue for genomic profiling of the cancer. This is the most advanced testing that can be done on cancer cells today. This testing involves sequencing the DNA of the cancer cells to identify what mutation(s) exist that are causing the cancer. There are several mutations that can be treated with a “targeted therapy”. These targeted therapies are a type of cancer treatment that can be given in pill form to a patient and are designed to attack only the cancer, unlike traditional chemotherapy which attacks all fast-growing cells. This results in much better outcomes for the patient and less side effects than traditional chemotherapy.

There is no guarantee that my cancer will test positive for a targetable mutation, but that is what we are hoping and praying for. I hate to get too much into hypotheticals, but I am also a planner and I like to analyze so I’ve already broken down and ranked the potential treatment options based on what the test results may be. I prefer to think of it as “drawing up the battle plans” for the fight ahead.

1.    Targeted Therapy – This is by far the best treatment option offering the least amount of side effects, best chance of a prolonged response, and least impact on daily life.

2.    Clinical Trial of a Targeted Therapy – Its possible that I may have a mutation in which there is no approved targeted therapy. However, there are many clinical trials underway testing promising new drugs for newly discovered mutations. If I have a mutation that aligns with a clinical trial, this will be our course of action.

3.    Immunotherapy / Chemotherapy – I’ve already undergone immunotherapy which worked amazingly well, despite discontinuing treatment early because of toxicity issues. There is no guarantee that it would work again and there is the risk of experiencing toxicity issues again. Traditional chemotherapy is always an option, but brings the most side effects and the least chance of prolonged remission.

We have options and have caught the cancer early. This time around its more complex, due to my seizure history and partially repaired shoulder. Adding any type of cancer drug will increase my seizure risk and most likely exacerbate the side effects of my seizure medication. There is a very small chance that my oncologist may want to wait and monitor the cancer for a few months, but I am by no means depending on that.

Next Steps
Maureen and I have an appointment later this week with our oncologist and hopefully we’ll receive the test results and decide on a course of action. Based on my lengthy explanation above we are definitely hoping that I am eligible for a targeted therapy. However, I am mentally and physically prepared for whatever course of action is needed.

Reflection
I was initially surprised at this news, but being a stage 4 lung cancer patient, I always knew that the cancer was going to come back at some point in the future. It’s unfortunate that the majority of my progression free time was spent dealing with seizures, but nothing is going to change that now. I am very blessed for all the support that Maureen and I have received over the past two years. At times its been frustrating that I cannot drive anymore, but it does make life simpler not worrying about traffic or commuting. I expect that this will help as I begin whatever cancer treatment is decided upon. I will be posting again once we receive the test results and decide on a course of action.

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.