Days of Rest

Eight days after my brain stent placement, I’m doing very well. I went back to work on Tuesday and worked four full days. I did take two 15-minute breaks a day to step away from my computer to sit and close my eyes. It did help.

Thankfully, I didn’t come back to an excess of projects that needed my immediate attention. There was just enough to test my eyes. And it was my eyes that felt it the most. After a couple days of headaches, those eased, but fatigue and eye strain weighed heavily on Friday. Based off previous non-emergency brain procedures, none of this is unexpected.

I went to bed early every night, listening to my brain and body. Sleep was welcome and thankfully my kitties let me sleep in this Saturday morning.

During the week I received two special “Get Well” boxes in the mail from family & friends back in NY. I appreciate that they took the time and spent the money to do something to help in my recovery. Tea, tasty bites, and heart-felt messages remind me I’m not forgotten and I welcome the support.

I won’t know for SURE if the stent is secure and stable for another six months when I’ll have ANOTHER angiogram. In the meantime, I’ll continue to live each day, try to take care of myself, and be careful to avoid any injuries.

As we celebrate Easter tomorrow, I too, celebrate another battle with this brain aneurysm with hope, renewal, and new life with more brain bling.

Lending a Hand

We spent the day yesterday down in the beautiful coastal town of Wells in the southern Maine attending a fundraising event for a Well’s resident who suffered a ruptured brain aneurysm in March.

Due to Covid19, our MBAA group have not attending any of our usual brain conferences, fairs, and support events since March of 2020. So, we were looking forward to pitching our tent once again. And hugging! There was hugging!

About two weeks ago, I saw a news report on TV about fundraising efforts benefiting Bob Hoffman, who along with his wife, and another couple, own and run the Living Wells Farm, a horseback riding and boarding center. Bob suffered a serious brain aneurysm rupture in March and continues to heal with rehabilitation therapy at home.

Once we saw Bob’s story, we wanted to make sure he and his family were being looked after and had all the information and medical assistance they needed during this critical recovery period. The #BobStrong Fundraiser offered the opportunity to introduce ourselves and offer our help in anyway.

A small segment of the #bobstrong team

We contacted Katie from CrossOver Fitness Maine who, along with her husband Andre, were organizing the event for Bob at their fitness center in Wells. Thankfully, there was a quick response which also led to Bob and his wife attending a timely brain aneurysm support group meeting with us over Zoom this past week.

It’s so important for survivors and their caregivers to know they’re not alone during these critical periods of after-care and healing. We were really please when Bob and Amanda showed up on our computer screens for the support group.

Everyone is different. Every aneurysm is different. And everyone responds to a ruptured brain aneurysm differently. Some are receptive to help, others can walk out of the hospital on their own and never look back or look into what may have caused the aneurysm and how it has effected their brain and their families. You can lead a horse to water, but you can’t make him drink. You can lead a survivor/caregiver to a support group, but you can’t make them share their story or be open to receiving assistance and education.

Thankfully, Bob and Amanda were receptive to our group and were engaged and open with us. We were also highly impressed with the path to recovery Bob is currently on and the services he has been offered through some very tenacious efforts by Amanda and their rehabilitation center, Rehab Without Walls.

Yesterday’s fundraiser was a beautiful example of a community coming out to support one of their own and how they have wrapped their arms around this young family in their time of need. We met Bob’s parents and children and some of the good friends helping the family on their brain aneurysm journey. I am reminded, yet again, how the physical brain aneurysm happens to one person, but the entire family suffers the results as they are often confused and scared by all they have seen.

Our group tries to assist survivors and families in understanding the recovery period and what one can expect. We NEVER give them a timeline on when their recovery will be complete. No one can tell you that. But, if you put in the time and educate yourself on how best to help the survivor, it can make that journey easier and perhaps quicker to achieve better results.

Dave and I were joined by two of our committee members, Amy and Linda for the day and we were impressed by the over 200 people who participated throughout the day and brought such a loving and caring attitude. We were asked many questions and met a few people who had also been touched by brain aneurysms in their own families.

Linda, Dave, Heidi, Amy, and new survivor, Bob

Bob is a very fit and strong individual. Both of those traits should benefit him greatly during recovery, but it’s not a quick process. Reading my own blog from my first few months is a quick reminder of how frustrated and depressed I got. Having that strong support group around you is a huge benefit and I think Bob is one very lucky man after what I experienced yesterday.

Spending the day with Linda and Amy also allowed us some catch-up time and the chat was mostly about our experiences with brain aneurysms and our combined efforts in the state to educate people. I have something in common with both of them: Amy is also a survivor and Linda lost two loved ones to brain aneurysms – both of her parents. It’s interesting how easy it is to discuss these difficult topics when you know the person you’re speaking with has also endured similar difficult experiences.

Linda, Dave, and Amy

It felt GOOD to be out there doing GOOD again. It felt GOOD to load up the car, pitch that tent, lend a helping hand where we could, and hug people again.


Heartfelt Love and Support

Dave and I had dinner in Gorham, Maine tonight. Why would we drive and hour and a half just for dinner? Here is why.

A friend and former member of the Maine Brain Aneurysm Awareness Committee was in need of support. Her parents, husband, and children needed to feel the love of family and friends.

Jess joined the committed after losing her best friend, Karolina Kurka to a ruptured brain aneurysm. The annual Karo-5k was named in Karolina’s honor and Jess was a huge advocate for raising brain aneurysm awareness and making sure Karolina’s memory lived on.

It was also through this awful loss that Jessica became educated about brain aneurysms and the importance of getting yourself to a hospital for a scan if you’re having issues. It was due to Karolina, that Jessica went to the doctor after suffering severe headaches.

In 2012, thinking she could possibly have a brain aneurysm herself, Jessica and her young family were instead stunned to learn she was diagnosed with astrocytoma, an aggressive brain tumor/cancer. The tumor was surgically removed at Maine Medical Center by Dr. Florman, one of the two surgeons who assisted with my own craniotomy and brain aneurysm clipping in 2014.

After successful recovery and treatment, Jessica continued to thrive and enjoy life with her husband and two young sons until five year’s later in December of 2017, her tumor/cancer returned.

In early 2018 the new tumor was removed surgically and she endured 30 radiation treatments and chemotherapy.

In May, an MRI revealed the tumor had grown back and although it was not curable, it was treatable.

In June, Jessica celebrated her 34th birthday and in July, Jessica had her head shaved. Her mother, in a touching show of solidarity, shaved her’s as well. 

Dave and I joined their family here in Augusta for the Bob Burn’s Memorial 5k/Walk for Brain Tumors where it was wonderful to give her a hug and show our support.

In August another MRI revealed a 2nd tumor had developed in an area in the back of the brain that effects balance and movement. Devastating news and new immunotherapy radiation was scheduled.

And then a follow up MRI in October showed more tumor growth and their family made the heartbreaking decision to cease further treatment. 

Tonight Dave and I attended a fundraiser in Gorham for the family. It was wonderful to see such a large turnout at the elementary school to lend their support both monetarily and emotionally. Children playing, people laughing and LIFE. 

Jess is struggling, but doing amazingly well considering everything that she has had to endure.  It’s very difficult to know what to say. I did tell her we loved her. I hope that is enough to give her some comfort. I can’t imagine the overwhelming feelings she and her family must be enduring right now. Especially during the holidays.

You are BRAVE Jessica. You are LOVED.

I wish this wasn’t happening to your family, but I DO know you’ve shown us all how to endure. Your strength and bravery will guide your sons going forward. Let the love and support you’re being shown right now give you comfort and strength. We love you.