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

 

 

Flashback…Feelings during the wait for a plan

This is what I am happy to share…some of my writing from last year that really gets to the heart of my situation. My journal, while my life line last year, is enlightening to look back on…

At this point last year, I was out of the hospital and having various appointments to follow up on my fourth stroke. I had reassuring appointments with two doctors but was still having the heaviness in my left arm and leg without an explanation. Those doctors reiterated that I was a complicated case and that it was possible that I would never find out what was causing my symptoms to show up again. I was laying low until my scheduled angiogram on April 7th that I hoped would show insight. Here’s what I was thinking at the time…

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“Why won’t my left side come back? I need it to “un-numb.” The frustrating fact of illness is that positive thinking can’t make it better. Working your hardest doesn’t guarantee anything. Isn’t that the kicker in life?? I think so! Generally speaking, hard work and perseverance pays off. That isn’t always the case with illness. I can’t stand that my left side is numb. It is also frustrating that it’s a total subjective feeling at this time. The docs certainly believe me especially given my pass but it’s not obvious…to them, to others and even to the basic medical tests.

I’m not like everyone else; this is a difficult and a tough lesson to learn. Not in the sense that I am comparing my accomplishments or looks or any of the things that women often do (but shouldn’t)…but in that my body isn’t the same as most people. I think I have gone so long feeling well and not having any issues that I started to forget that I’m unique.

I’ve only heard of a few other people in my life who have this feeling of left sided heaviness/numbness/ache. I think many stroke survivors have this feeling yet it’s amplified and renders their limb unusable. Some MS patients have this feeling intermittently.

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Then there’s me…CNS Vasculitis patient whose symptoms mirror Moyamoya disease. Still a rare disease and one that every single doctor I meet questions. Yet, I have gone 14 years without major symptoms. So, I started to think I was like everyone else. I dove back into life with a passion to do it all. After all, I seemed fine. I look like everyone else, I have a similar family to many, I enjoy doing the same things as my friends. BUT I AM DIFFERENT. My body reacts to stress, medications, exercise, food, etc. differently then others. My left side goes numb when I do too much.”

I was still resting at this time, so grateful for all the support of meals, cards, etc…and hugging my kids super tight since I didn’t know what the future would hold.  What a rollercoaster of emotions!

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Go with the flow!

I stopped planning and have just been going along for the ride of life. I sometimes stress about this as I don’t even know what’s on tap for the following day…but lately, it’s just how life has been going. Recovery and transition back to real life has been slow in my head but quick in real life. I’ve tried to slow down to figure out what helps my recovery the most.

I’ve easily found that being with my kids and family time is key. I am also feeling like one-on-one time or small groups seems to work better for me lately. I haven’t been reaching out to some my closest friends like I used to but I am working on that. I’ve found myself avoiding large gatherings and parties as I just haven’t felt comfortable going. I am also working on this.

A fantastic therapy for me is the feeling I get when I help others. This is why I found myself at a charity beer tasting last night with 90 people….and I was one of the hosts!

Hops Cover Page

Seemingly out of nowhere, I have partnered with two local moms-who are also passionate about heart disease and stroke- to work together as Sisters@Heart. Each with stories of their own, we all want to give back to the American Heart Association. Together we are bonding as we muddle our way through our health challenges.

Honestly, I planned to give myself a year before jumping into any big obligations. I wanted to be well and strong before committing to any new endeavors. But life sometimes has other plans. The idea of Sisters@Heart was born and we have taken off. We are raising awareness and funds for the American Heart Association.

I didn’t want to ask people for anything else after all the help and support I received in the past few months. However, I am not raising money for me but for others who need it- people who need the research and technology that someone else funded years ago to save my life this year.

Back to last night…I was a nervous wreck to put myself out there- literally at the bar and figuratively as a partner of Sisters@Heart. We had received an amazing response of people who purchased tickets and gave us encouraging words. Yet leaving my couch and the comfort of my quiet home scared me, yet also thrilled me.   Nervously, I prepared for the night reminding myself that I needed to be there for my friends- Jamie and Caitlyn who planned the event with me….and all those who were coming to support us.

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I sure am glad that I did! I had a ton of fun and felt the energy and spirit of a group of compassionate, giving and fun people. We tasted beer, chatted with friends, bought raffles and just had a lively night for a good cause on a cold Wednesday. Going with  the flow seems to be working for me right now!

Hops for Heart girls

 

“Who me, a blogger?!”

“Who me, a blogger?! No way. Who would want to hear what I have to say?”

Over the years, I have had this discussion- about blogging and/or writing a book- so many times with my husband. Who would ever care what I have to say.

As many of you know, I had my first stroke at age 21. One of my primary ways of coping through my four year of treatment and recovery was journaling. I found taking pen to paper was therapeutic and often enlightening. I was so sick at times that even walking was a challenge. I would find joy in simply walking four steps without falling. Yet my journaling was always available to me and a perfect escape from my real life fears and challenges.

Over the years, I have always wished to get back to that mindset of enjoying the simple things in life through slowing down and journaling. Unfortunately, real life tends to strip away the simplicity of sitting in a coffee house journaling. I became a mom with two kids who kept busy volunteering and spending time with family and friends. Along with reality, my perspective and calmness diminished.

Yet, both positively and negatively, I found that simple joy again this year as I confronted my new disease and two brain surgeries. Real life was scary but my journaling brought me peace. Not only did I use my journal (technically a laptop now) as therapy, I also started sharing some of my raw emotions on Facebook. As a National Spokeswomen for the American Heart Association last year, I initially created a community page, ISurvivorLisaDeck, to educate and create awareness about cardiovascular disease and stroke. Upon my new diagnosis of Moyamoya disease, this page quickly became used somewhat as a Caring Bridge site. It wasn’t my intention but it was the easiest and most efficient way to communicate with my family and friends who were worried about me. I used this page to share my messages and to gain confidence and support from my friends.

Now that I am working towards a full recovery, I have decided that a blog is needed. Sharing my real feelings through my experiences helped me tremendously but I’m not ready to stop. I have just realized that Facebook probably isn’t the place for over 300 word posts 😉 So accidentally, I have become a blogger….I’m just now making it official. I hope you’ll come on this ride with me!