National Wear Red Day Reflections

National Wear Red Day was this past Friday- a perfect day to reflect on stroke, heart, volunteering and life in general.

Memories

National Wear Red Day brings me back to 2015 when I was serving as a National Spokeswoman for the Go Red for Women Campaign. That role of being the face and story of stroke for women around this country was such an honor. That was the year that I took initiative and created my Isurvivor page (www.facebook.com/ISurvivorLisaDeck) . My goal- then and now- was to share messages that promote wellness, good health and living actively with stroke and heart disease. Little did I know that it would lead to a new challenge of a fourth stroke and two brain surgeries. I still think of this day three years ago when my advocacy and volunteerism jumped to a new level. I’ve been in a lull this past month but looking at these memories reinvigorate me!

2015 Class of Go Red Real Women

Sisterhood

As part of the Go Red for Women campaign, I became a member of a group of strong, passionate, dedicated women with whom I instantly bonded. We connected because we share similar life-threatening experience. Yet, each of us is here today sharing our story and living full, long and happy lives. Social media has enabled us to maintain close relationships- especially considering we are spread around the country. We gain a new class of #heartsisters each year. On this special day every year, I love sharing in and seeing all the cool and amazing things my fellow volunteers and advocates are doing.

Another class of Go Red ladies

Community

I have been blessed by close knit relationships from many phases of my life. Seeing family and friends donning their red outfits in support of my cause truly warms my heart. Sometimes it’s a needed reminder of the support and love that surrounds me and my family. This feeling extends to my community elementary school where my son attends school. Each year they host a Wear Red Day and even raised over $400 this year the American Heart Association. How cool!

2018 Wear Red Day Collage

Volunteerism

Dates and special days are important to survivors. Wear Red Day gives me an opportunity to reflect on all that has happened in my life and feel blessed. I’m never quite sure what to do to acknowledge the day but volunteering this year sure seemed like a good option. I was asked by one of my favorite advocacy directors to assist her at a Tobacco Free Kids conference. Our goal was to collect reasons from teenagers to change the legal age to buy tobacco to 21. It was enlightening to see a group of teenagers engaged in a public health campaign. Spending the day helping also made me feel good inside.

Our family was hit by a flu like virus this past week. We had planned to attend an evening event on Wear Red Day but I had to prioritize our health. We had to opt for a low key family night. That brings me to reason #5 of why Wear Red Day is important…

My Family

My Family

My husband and kids are what I fight for as I battle my health challenges. They are who I want to learn the values of good health and a healthy lifestyle. They are the ones I want to teach about volunteerism and giving back. And they are my loves that I get to share my challenging, messy and awesome life with!

Some days I just want my old life back…

Some days I just want my old life back. I know that everything happens for a reason. And while I usually fully embrace this theory, it doesn’t mean that I don’t sometimes go kicking and screaming against it.

Emotionally, my bucket runs over. Even though my bravery, courage and strength were challenged by my health, today I have meaningful connections with others, I live my life filled with passion, and I am open to life’s many possibilities.

Physically, I am frustrated where I am. I had a Trans-Ischemic Attack (TIA) two nights ago. We were told that these can occur post- surgeries and they did. I suffered three within the month after my surgeries- and haven’t had one since. Out of the blue on Monday night, I had trouble reading the first sentence of Zack’s book. My face then went numb and then my left side felt heavy. I called Brian who helped me calm down. I think I started panicking which resulted in heart palpitations. I moved to my bed. He handed me a Xanax and I worked at calming down. The slight numbness remains still two days later.

We played the why game…was I dehydrated due to the temperature change? Did I do too much last week between DC advocacy and Girl Scout camping? Was it a blood pressure issue? Were my emotions running to high? Is something majorly wrong?

Post TIA, I feel like I have been hit by a bus. I have been exhausted so have been sleeping whenever I can. I feel dehydrated so I keep drinking water. And I have this headache that won’t fully subside. Even as I write this, it worries me…so I turn to my husband.

Fortunately, Brian is calm and reminds me that the surgeons said this could happen occasionally. I recall how many fellow Moyamoya patients suffer TIAs often (I read on our FB page) but I still didn’t expect myself to have them. I don’t know if it was positive thinking or naiveté but I planned to go TIA and stroke free forever. But that isn’t the case.

Today, I am frustrated. I just saw a photo from two years ago and I miss that Lisa. The Lisa that was physically in the best shape of my life, 25 pounds thinner than I am today. The Lisa that was regularly physically active without fear. The Lisa that had finally figured out a goal with ISurvivor and serving as a National Spokesperson. The Lisa who could parent easily and without worry that I’m scarring my children from my surgeries.

2014

I know it’s okay to wallow at times, and getting it out on paper helps me. So now I try to remember the positives of the 2015 Lisa. The 2015 Lisa didn’t know that her brain was at risk of a stroke. The Lisa who didn’t remember how therapeutic and healing it felt to journal and share her story. The Lisa that fell back into the busy rat race of life and forgot to appreciate the little things. The Lisa that didn’t remember how strong she was until she was forced to find out.

So I need to move forward. I can’t get old Lisa back but can work to gain the parts I want. I just hate that I’m physically scared to move forward with exercise, diet, etc. I want to get it back but can’t seem to get past that fear. Fortunately, I am an ever evolving project.

As always, thanks to those of you who read this and support me.

A simple question that isn’t so simple

For me, it’s a loaded question that I have struggled with for many years. Mostly because I am a four time stroke survivor who most recently underwent two brain surgeries within a week on the West coast. I struggled between being the positive, happy person that I usually am and stating the truth of my hardships. I soon learned how to handle it especially once I recovered.

This question can be trickier when tough times happen during the holidays.

Three weeks ago, all was well with me and my family. We had a wonderful fall and were excitedly awaiting the Christmas holiday and vacation. When asked that questions, I was able to say “I’m doing well. I’m back to feeling like myself. I’m busy with Christmas prep but all is well.”

However, in the past three weeks, my life is more like a bad movie. My son was very ill with stomach pains, a fever, and nausea which led to a diagnosis of acute appendicitis. Within a day, we went from a doctor’s appointment to an Emergency Room visit to an ambulance ride to Mass General Hospital for an emergency appendectomy at 11:30pm that night. At each of the first two locations, doctors suspected constipation but our aggressive advocating for Zack led us to the correct diagnosis. Thank goodness we didn’t go home and just watch him. Twenty-four hours later we were home with a recovering, brave boy who now needed to avoid all physical activity (sports, gym and recess) for a month. But he was well and recovering.

At the same time, my husband found a suspicious lump in his groin. On the same day as Zack’s surgery, Brian had an appointment with the primary care doctor. (He thankfully insisted on keeping the appointment.) Within the next three days, Brian underwent an ultrasound that questioned cancer. We then saw two urologists who eased our mind a bit. We scheduled surgery four days later to remove the mass a week later. Surgery went smoothly but Brian still had to recover. Immediately post-surgery, the renowned surgeon and expert pathologists didn’t think the mass looked malignant. Despite an uncomfortable recovery, we had a lovely albeit low key Christmas.

Two days after Christmas, Brian went to his post-op follow up appointment in Boston (alone as we didn’t suspect anything) and heard some shocking news. The pathology report indicated that there were cancerous cells and Brian was advised to make an appointment with an oncologist.

We were shocked and terrified. We did everything that we shouldn’t….We googled. We stalked medical studies. We stayed in and spent time alone as a family (that we should do!)

I cried a ton as I was truly worried that he would die. What we read didn’t say this but it was hard not to go to worst case scenario. It was a terrible week!!

When people asked me how I was doing that week, I could barely answer. Terrified. About to cry. Worrying about what life would be without my husband. Wondering why we have to face more adversity. (Yet thankful that I am well enough to do so.) Unable to focus on anything. Angry that our family may need help again. Pleading with God for a good outcome.

I never thought we would come out of our Tuesday oncologist appointment feeling relieved that Brian has lymphoma. Yes, he has Extranodal Marginal Zone Non-Hodgkin’s Lymphoma. It’s a shock to both of us that he has cancer. Fortunately we were relieved this lymphoma is highly treatable and generally non-life threatening. Whew! We rode home from Boston anxious to hug our kids and relieved that he would live.

However, now that we basically know what he has, we are faced with the yucky reality that he will need to undergo further testing (at the least) and possibly more treatment and/or lifetime surveillance (at the worst.)

I’m journaling here are Target and have run into a couple people I know. I’ve gotten the casual “How are you?” question. I smiled and said “fine” to one person but opted to explain to a couple others.

I know this can be much worse but it still stinks. Zack has recovered and is back (earlier than expected) to physical activities. Brian is recovering from his surgery and will undergo a PET/CT scan as well as more labs next week followed by another oncologist appointment. My husband has cancer. Yes, it’s treatable and generally not life threatening, but it’s a new reality for us.

How are you?

I’m a bit overwhelmed, relieved and anxious for what the next couple of weeks will bring.

But I am also blessed by a strong and determined husband, a close loving family, awesome friends and a positive mindset. #TeamLisaAndCrew