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.