A Glimmer of Hope

Last week the mail carrier delivered my newsletter from the National Brain Aneurysm Foundation, which is based near Boston, MA. As I flipped through it, my attention was caught by two stories that outlined current research into brain aneurysms.

I already knew about the work being done at Yale. Research there involves genetics and the identification of risk for brain aneurysms through DNA. I was one of the thousands of brain aneurysm survivors asked to participate and last spring the lab at St. Johns Hospital cheerfully drew my blood and sent it off to the Ivy League school.

According to the article, five spots on the DNA strand have been identified as genetic variants that could carry a significant risk for brain aneurysms. As research continues into this extremely complex area, I see a glimmer of hope that someday we will have genetic screening that can help identify people who are at risk for developing brain aneurysms BEFORE their brain blows up like mine did. It would be a true blessing to have better screening.

The other article that caught my eye in the newsletter detailed ongoing research funded by the National Brain Aneurysm Foundation to save brains (and therefore lives) once an aneurysm ruptures.  This research indicates that neurological problems that follow treatment for ruptured aneurysms may be caused by tiny blood clots and vessel spasms. The hope is to develop medications that target those teeny clots so that a ruptured brain aneurysm does not doom us with a lifetime of impairment or lifestyle adjustments.

In my opinion, both types of research are important and encouraging. Every year about 30,000 people in this country rupture brain aneurysms. Only 18,000 of us survive to face another day.  Wouldn’t it be nice to cut down on the ruptures and improve the survival?

In an era when cancer dominates the medical research community and its funding dollars, it is gratifying to know that at least some researchers think brain aneurysms deserve time and attention, too.

Not just any haircut

Anniversaries are upon us, and many have nothing to do with weddings.

A couple weeks ago, I saw a young man I know. Call him Mike. He is handsomely cute, funny, and remarkably insightful.  This 20-something “kid” (my words) is also blessed with an envious amount of shiny, wavy hair which is the color of a rich cup of French Roast coffee.

I hadn’t seen Mike for a few months. So when I did, I noticed that his hair was much longer than usual. Polite person that I try to be, I didn’t mention it. Lots of young men wear their hair long these days, don’t they? I figured he was just experimenting with a new look.

He’s not. Mike is planning to have a friend shave his gorgeous hair completely off.

“You are?” I asked. “Why? Your hair is perfect!”

Then he explained.  One day last June, Mike got home from work, flipped on his TV and flopped on his couch to watch Jeopardy like he always did. A few minutes after sitting down, he felt a crack inside his head. As the TV show progressed, Mike felt “not right” but also thought the feeling would pass. Instead, he passed out. When he came to, a different TV show was on. Still not knowing what was happening to him, Mike groped around for his cell phone, found it and called 911.

Mike saved his own life with that 911 call because he had ruptured a brain aneurysm. Obviously, he survived his surgery and long stint in ICU. Today, he works, drives, and enjoys spending time with his family and friends. He even has a significant relationship with a young woman now!

Mike admits that he just wants to get on with his life. But he also admits that each day brings reminders of what happened to him. He loves driving but is much more exhausted once he gets to his destination. He needs to seek a few minutes of alone time during parties with friends. He sometimes feels frustrated with jobs that require an excess of multi-tasking. Most annoyingly, he can’t always laugh off occasional forgetfulness, even though every human being forgets things once in awhile. Face it, when friends or family forget something, they shrug and say, “I’m showing my age, I guess.” When a brain aneurysm survivor forgets something, we pause and think, “Is it happening again? Am I okay?”

We look the same as before our aneurysms ruptured. We have the same interests, activities and personalities.  But we are different, too.  And it’s all too easy to forget that.

Mike is approaching his one-year anniversary with mixed feelings. In the spirit of youth, however, he decided to grow out his hair and shave it all off on his anniversary date.

“I haven’t seen my scar in months,” he said. “My friends haven’t, either. So I thought it would be good way to celebrate living and, at the same time, remind myself and everyone else what happened.”

I laughed.  What a great idea! It makes a lot of sense. My own anniversary is approaching (three years). Is it time for me to shave my head? Maybe not yet. I think I’ll go to a movie instead.

Moving slowly in an Ipod world

When people ask what it’s like to recover from a ruptured brain aneurysm and vasospasm strokes, I always say, “It’s like traveling at 33 mph in an IPod and IPhone world.”

People with names like Linda, Bill, Brenda, Sue, and John know exactly what I mean.  As for those named Ashley and Ryan? Not so much.

In today’s world it’s easy to feel out-of-step. Maybe all those brain surgeries affected my ability to conquer modern communications technology.  Are my fingers clumsier?  Are my brain neurons too disconnected and slow to interpret tiny images quickly and accurately? Did I lose the capacity to learn new things?

With our handheld  phone we can shoot pictures and video, write messages for immediate delivery, talk, play games, navigate through town and get 24/7 news alerts and information.  It’s amazing, exciting, addictive and, for me, perplexing.

I’m perplexed because I honestly don’t see the point.  Yes, our handheld technology gives us fingertip communication and information accessibility. But it doesn’t supply us with peace, quiet, or spirituality. Nor can it replace face-to-face smiles or soothe our hurts and sorrows. It can’t increase our concentration or improve our attitude.

To be honest, I didn’t mind traveling 33 rpm in an IPod world. Brain trauma and its recovery taught me to appreciate life and its simplest achievements. It taught me to balance choices and value simplicity.  It taught me to slow down and enjoy little pleasures.

So I’ve made a choice. I don’t and won’t Twitter, Tweet or Text. Traveling at 33 rpm is just fine by me.

The slightest change in pressure

The merry month of March has come in like a lamb here in Minnesota. Winter has been long and snow-filled. Longer, warmer days are a welcome change. But I know that the lamb will leave and the lion will roar. I also know that those of us with brain aneurysms will feel that feline’s bite.

The fact is, changes in weather can hurt. My aneurysms have been surgically fixed, but barometric pressure fluctuations seem to change the intracranial pressure in my brain.

Have you seen those fluid-filled, decorative barometers? As the outside air pressure changes, the fluid in the tube rises or falls. I figure that’s what happens inside our heads, too.

A couple months ago, as I was reading the St. Paul Pioneer Press, I noticed a Q & A medical column.  The reader’s question: “A cold front came in and I had head/face pressure. What is that all about?”

The doctor’s answer was that weather changes can trigger migraine headaches as well as pain in arthritic joints. He speculated that a difference in the body’s internal pressure and the outside barometric pressure was the reason.

So I asked members of my support group at the National Brain Aneurysm Center whether they noticed weather-related problems. EVERYONE did. Responses ranged from “feeling fuzzy” to feeling tired and fatigued. Those of us who had undergone open craniotomies noticed something even more bizarre. As the weather changes, the skull bones that have knit back together after surgery actually dent in or out.

My husband is a prove-it-to-me kind of guy. Whenever I comment that the weather must be changing, he says, “Let’s see your dent.” I brush the hair away from my forehead, he studies a spot just beneath the hairline and affirms my prediction. The fact is, there are days when that spot is completely flat and looks no different than any other place on my forehead. Then there are days when it is so dented it looks like someone shot me with a gun.

Spring is here at last. Some days will be filled with lambs. Others will be tormented by lions.  If you want to know what the day will bring, forget about forecasts from high-priced television meteorologists. Instead, ask a walking, talking barometer. Ask a brain aneurysm survivor.

Maintaining the engine

February is Heart Month and the American Heart Association does a great job getting the word out about heart disease. It’s important information and we are lucky to live in the time and place we do because doctors have gotten really good at fixing hearts.

Most of the time.

Long before my brain blew up, I was diagnosed with heart disease. It was a no brainer for physicians because I have a strong genetic link to heart disease on my dad’s side.  So are aneurysms, but those are harder to diagnose than heart disease.

While in my 20s, I’d have unexplainable bouts of high blood pressure that would go away. In my early 30s, doctors wondered why my heart beat too fast. It, too, would go away, come back, go away. By my late 30s, my diastolic readings were steadily, gradually elevating. In my early 40s and at the doctor’s office for a sinus infection, my doctor took my blood pressure several times, listened to my heart a lot and said, “I’ve had enough of this. It’s time to get you on blood pressure medication.”  

Dutifully, I took blood pressure medication daily. The problem? It didn’t work as well as my doctor hoped.  Basically, the lower reading was a stubborn sucker. With medication, my blood pressure went from 125/105 to 118/95.

Then my brain blew up.

Doctors and nurses at the National Brain Aneurysm Center saved my life. They clipped and coiled, clipped and coiled, clipped and coiled until, eventually, all of the ticking time bombs were gone. In the midst of those surgeries, a magical thing happened: My blood pressure problems disappeared.

Today I can boast readings that make everyone my age envious: 107/65, 110/72, 105/73…

The brain is the engine that drives the body. It tells the lungs to breathe, the eyes to blink and the heart to beat. The lesson: Take care of your heart, but don’t forget about your head. 

Thinking about `what if…’

Happy New Year!

December blew by in a rush. Cookie baking. Some pre-holiday gatherings.  Cookie baking.  Holiday decorating. Cookie baking. Cleaning and furniture rearrangement.  Cookie baking. Snow shoveling. Vile flu and a headache that lasted eight days. Cookie baking. Pre-surgery preparation.  Holiday celebration. Eldest and youngest sons swooping in to “help.”  Finally the much-anticipated highlight: my husband’s hip replacement surgery.

Frankly, I’m exhausted. I’m also amazed at the amount of  “stuff” hip and joint replacement patients accumulate prior to surgery. My husband’s pre-surgery preparation list included elastic shoelaces; grabbers of varying lengths; canes; toilet risers and shower grab bars; shower seats; incredibly long shoe horns; and those odd-looking gizmos to pull on socks.  Oh, let’s not forget the walker.  It has a seat, a basket, hand brakes and night reflectors.  Just add headlights and a John Deere motor and he’s street legal.

Among the things he had to do prior to surgery: Make out a Health Care Directive. Like many of us, he had stubbornly avoided thinking about “what if….”.  But it’s so important to have one—and I learned that the hard way.

When my brain blew up, the Health Care Directive forms were in my office buried with other paperwork in my “To Do” file.  While in ICU those first few days, I floated in and out of sleep. Although much of it remains a blur, I was very worried about unfinished business.  When one of the hospital’s social workers came, I remember a sense of relief.  She brought the forms and in a soothing clear voice, explained each option, checked my selections, and rearranged my bed tray so I could sign it.  

We all should make out a Health Care Directive—and we should do it long before we need it. But human nature is mysterious and, too often, we procrastinate “should” until it becomes “must.”

As for my husband’s surgery?  It’s been much more of a blessing than a curse. His surgeon is unbelievably talented and skilled.  St. Joe’s orthopedic nurses were fabulous. The home health nurse and physical therapist are grand.  My husband’s hip doesn’t hurt at all. In fact, he’s getting around better than before his surgery. Only one question remains: What are we going to do with his tricked-out walker?

Making a plan

My grocery list is getting longer as the holidays approach.  Awhile back I mentioned my problem with grocery shopping and was reassured by your comments that I was not alone.  Apparently grocery shopping is a brain drain for many of us who’ve had aneurysms. Perhaps we could share some helpful hints?

What seems to work best for me is timing and mapping. After struggling through the exhaustion of Cub and Rainbow, I decided to shop at a grocery store that was more manageable in size yet moderate in price. Because I live in White Bear Lake, I chose Festival.

Using grid paper from my son’s days in geometry, I created a rough map of the store starting at the entrance (flower mart, quick deli and bulk sales), ending at the checkout (bakery and books).  It’s a general map, and items aren’t always shelved logically, so it’s not perfect. But it helps.

At home, I take my list and reorganize it on 3×5 cards using the map. The first 3×5 card includes the bulk sales and fresh produce.  The next one takes care of half of the aisles in order. Another card lists meat and dairy. The last lists snacks, freezer, and bakery items. If I have coupons, I clip them onto the cards.

I’ve learned that, by taking extra time at home mapping my list to the store, I spend much less time traipsing up and down the aisles. In fact, I can skip some of the aisles depending on the list. As for backtracking through the store for something missed or forgotten?  It almost never happens anymore.  The exception, of course, is when items get moved (sigh).  Or I need something the store considers unusual and it is shelved in an illogical place. 

As for timing, I try to shop for groceries on weekdays before the 9-5 crowd gets there.  I’ve been known to drive to the store, see a full parking lot, turn the car around and drive back home.  Why ask for trouble? There’s always another day and time to shop.

I didn’t like grocery shopping before my brain blew up and I sure don’t like it now.  If you have any helpful hints that YOU’VE learned, I love to hear them. Surely there’s a way we survivors can help each other ease the brain drain.

Keeping track of all the trips

Last week was a “trip.” I had a trip to my dentist, a trip to my family doctor, a trip to the optometrist and a trip to get the metal in my head checked.  When I heard the doctor say, “You’ve had a lot of work done,” I’m sorry to admit that I mixed up the week’s medical players and thought the dentist was talking.

Oops.  Wrong doctor.  Let’s blame it on the relaxation medication I was given.

Aneurysm treatment today involves either metal clips or metal coils. What’s used depends on the shape and size of the aneurysm, the recommendation from the team of doctors and the patient’s final decision.  

Clips are put in place by a neurosurgeon who performs an open craniotomy. It’s a permanent fix that involves about a week of hospitalization.  Altogether I have eight clips.

Coils are done by a neuro interventionist who threads the metal from the femoral artery into the brain aneurysm. I have four coils. This less invasive technique involves just one or two nights in the hospital and recovery is a breeze. The downside is that coils need to be checked every now and then to make sure they are doing their job. They are checked with a cerebral angiogram.

My last cerebral angiogram was 18 months ago. Since then, St. Joseph’s opened its new National Brain Aneurysm Center. What a difference! A procedure I was dreading turned into a trip that was surprisingly easy and pleasant. 

Let’s start with my team of caregivers. They were a perfect blend of kindness, friendliness, humor and exceptional skill. Dr. James Goddard was excellent about getting the job done without any surprising brain burns (the dye burns a little when it hits the brain and it burns a whole lot more when you aren’t expecting it).  Most surprising? The hours spent laying flat in bed after the angiogram were not as boring, noisy and chilly as I remembered. Instead I had a nice lunch, a quiet private room for naps and cable TV, and self-controlled warmth from a fabulous invention called a “warming gown.”

I won’t need another recheck for 18 months, so the results of that medical trip were good as well as pleasant. I wish I could say the same for my last trip of the week.

Two days after the cerebral angiogram, I flew to Pensacola, Florida, to visit my son at the Naval Air Station.  I anticipated a few days of warm fun with a family military ball and Blue Angels soaring through the skies. Instead, Hurricane/Tropical Storm Ida swooped in and stormed out, washing away planned activities and balmy sunshine. With temperatures in Minnesota warmer (and drier) than those in Florida, I wished more than once for the warming gown I had worn at St. Joe’s. 

It is the effort that counts

The weather forecast was for “frost on the pumpkins.”  Unfortunately, the forecast was right.

In the world of gardening, it’s a forecast that causes me to spring into action.  Some plants need to be put to bed. Others must be brought inside. The colorful annuals get a regretful look with words of thanks and goodbye.

I concentrate on the plants I hope to save—geraniums, mandovilla, pathos, philodendron, hibiscus, asparagus fern, Swedish ivy, spider plants, and shamrock.  I know that, with good care, many of these will do fine inside once they get over their shock. Others will struggle, lose their leaves, and need lots of gentle tending. Some, regardless what I do, might die.  

While I was outside a neighbor walked over and pointed out that it would be easier to let the cold kill them all and just start with new plants next spring.  “Why bother?” she asked.

I set down my trowel and thought about it.

“I suppose I do this for the same reason my doctors and nurses work so hard.” I said. “If they hadn’t bothered to try to save me, I wouldn’t be here repotting a shamrock I’ve had for 32 years, or hauling in this 10-year-old geranium. We wouldn’t be even having this discussion.”

My neighbor laughed. “Good point,” she said.

By the end of the day I had one pot left. In it I could put yet another spider plant (it had been a VERY good year for them). Or … I eyed the hibiscus. It hadn’t bloomed this summer. In fact, one of its branches looks dead, one is fine and the other is bare but getting new growth. Should I use my last pot for a sure save, or should I try yet another year to save this once-beautiful, now pathetic plant?

I thought of my neuro surgeons and nurses, of effort /risk vs. a sure bet/ win. Then I filled my last pot and brought it inside. Which plant do you think I picked?

Recognizing Miracles When We See Them

San Diego, here we come! Our youngest son, the Grand Finale, is graduating from boot camp into the Marine Corps. It’s an accomplishment few achieve.  We are proud of him.

The fact that he made it through such grueling physical and mental challenge is amazing. It’s a miracle, actually. When he came to our home, he was one day shy of his first birthday and weighed a scant 12 pounds. In this era of robust babies and toddlers, he was so small his height and weight wasn’t even  listed on the medical growth chart for his age.

Sadly, his size was not as puzzling as his strength. He could barely sit without support. Walking? No way. This little guy couldn’t crawl much, let alone stand.  So I took him to his doctor, a highly respected pediatrician. That doctor checked over the little guy and told me, “Don’t get your hopes up. He was born a low muscle-tone baby and he will always be a low muscle-tone kid.”

WHAT? GIVE UP? Was this God’s plan for the boy?

I remember bundling up the Little Guy and saying, “I can’t believe you pre-destine children.” The next day our family doctor gave that foster baby a going over, discovering elevated lead levels, anemia, RSV and a slightly clubbed foot.  When we adopted him three years later, our boy’s cheeks were rosy, his eyes bright, his smile mischievous, his weight and height smack in the middle of the growth chart. Could he walk? You bet. Run? Like the wind. Climb? Like a monkey. In short, the low-muscle-toned kid was gone. Taking his place was a boy with incredible strength, humor, resiliency and determination.

People said it was a miracle. For a long time I agreed. But now, having defied the odds of survival myself, I see that miracles don’t just happen. They are created.

Would our boy have grown into Marine-caliber strength if I had believed his first doctor’s prognosis? Would he have played hockey, football and lacrosse if I told him he would never be strong enough to compete? Would I be alive to fly to San Diego for his all-important graduation if my own doctors had given up on me? What if they believed the odds of my survival were too dismal to overcome?

Every day is a new adventure. Some adventures are challenging, scary and hard. Others are exciting, easy and joyful. But if we don’t embrace all of our adventures and take each journey with spirit, optimism and resolve, how will we know what can happen?