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.