Day 1. Is This The End of the Road?

So, dear friends… on the eve of my “death,” I must stop to consider a few big ideas.  More than a few, really.

I know logically that on November 13, 2012, the day I turn 48, it is no more likely that I will die from Vascular Type Ehlers Danlos Syndrome complications than from getting hit by a limousine bus on its way to Dulles International Airport.  There is no more likelihood of that doctor’s prediction coming true than if the doctor himself had told me he had placed a voodoo curse on me that would take effect on my 48th birthday.

Still, it’s easy for me to make a brave face in public and pronounce the doctor’s “curse,” of a shortened life to be fake. However, new, more serious health conditions have begun to show themselves so close to this infelicitous birthday: pulmonary aneurysms (with the attendant shortness of breath), and now a new aneurysm in my brain. It is easy to wonder whether that doctor was right after all, or whether I am, at age 48, about to stand on a slippery slope that drops away into nothingness.

When, in the dark of night, or on particularly grey days, I let my deepest imagination run amok, I worry that I will die soon, and that, as Hollywood has instructed me, I ought to have a Bucket List, that storied list of things to accomplish before dying.

For most people, making such a list is a game of pretend, like deciding how to spend the money they wish to win in the lottery the next day. But when I try to make my bucket list, it’s serious business.  The items are things I intend to start doing tomorrow.  That’s a lot of pressure, so much that the paper stays blank.  What to do? Travel seems to me like the best bucket list plan, so good; I can’t think of a substitute. Yet, what kind of travel makes sense for me, I ask myself, when my leg, feet, arms, elbows, knee and shoulder joints hurt so much from doing three activities in a day (like a doctor appointment, grocery shopping, and going to the tanning bed) that I am in bed the following day), so much that traveling in an airport sounds not just impossible, but awful, even to me, sworn travel lover that I am.  I love travel so much that I can’t think of a substitute entry for my bucket list. If I don’t find out about the rest of the world on my last venture, well, what can I possibly do?

In the true twenty-first century mode, I allow an internet search to do the thinking for me.  Happily, I find a Pinterest page called Kate’s Bucket List.  Each of her fantastic images has white text across the middle: “I want to catch the bouquet at a wedding,” or “I want to visit Turkey and drink tea from a Samovar.”

One reason I find Kate’s Bucket list to be so wonderful is that in addition to the expected travel items like,  “I want to go to NYC Fashion Week,” she makes wonderful wishes, like to dance under the stars, ride on the back of a motorcycle, and witness a wedding proposal.  They are unselfish wishes and communicate the simplicity and authenticity of a young girl—qualities I realize I am missing.  It is this kind of idea, and this kind of openness that I cannot locate in myself, and I realize that I have been looking for it for several years now.  I’ve tried, unsuccessfully, to explain it to my therapist as the sense of wonder and bewilderment I had in college, that gave me the unfettered ability to sit down and write, just any old time, about any old subject.  I had theories about important things.

I remember that I used to analyze couples and tell them (or more likely one half of the couple) that it was my theory that the best couples, the ones that stay together, are those who have found their neurotic compliment, their match in craziness.  Assuming it is true that all of us are a little (or a lot) crazy in our individual ways, we just need someone who understands and enjoys our unique sensibilities, and as much as possible keeps us from spiraling off the deep end.  I didn’t realize how flawed my theory was, but I believed it ardently and liked to tell people about it.  I had lots of those.

So, maybe my travel for my bucket list should be more amorphous than a single week-long trip to a geographical place.  Maybe my journey should be back to that place of earnestness, where I had theories, and took more delight in things.  It makes me happy just writing about it.  That’s a bucket list item.  I just don’t know how to attach an image to it and a label.c

Oh, there are a couple of things.  I want to wear a size 6 again.  And want to see the Barnes Collection in Philadelphia.  I want to see my nephews be successful, however they want to define that, in school, in life, and I want my little brother to find his path and be gloriously happy in life, and my big brother to find a new path and get the fantastic happiness he deserves.  I want my parents to live as long as possible, as healthy as they can.  But are those buckets?

Really, I owe Dr. Dumbass a great big thanks for his pronouncement about my diminishing years left on the planet when I was 44.  Otherwise, I would have kept on living with a dimmed introspection.  I would have cursed the bad days of my illness so much more than I did, because I would not have been aware.  Just for example, this week, I supposedly had 9 Days left to live; it would have been easy then to give up and go back to bed when I found it hard to get out of bed because of an all encompassing pain and fatigue, and I had to wear a wrist brace to type because my wrist was too sore and weak.  However, I understood the day to be special and important the same because it was Day 9. As a result, I made myself get up, get dressed, and make the day matter to me somehow. So what if I was not physically able to be jetting about the planet to the beaches of the Dominican Republic or to the Taj Mahal?

I made it as fantastic as Day 9 could be, given my circumstances. I have learned to do this as a mindfulness practice this year, on the days when I have felt good, and on the days like Day 9, that were not great.

And for all that practice, for the focus I placed on making myself aware these last 364 days, I came to understand that this birthday is momentous simply because I get to have it. So were all the others before it.  I just didn’t realize! All the more reason to celebrate.

What I learned this year could (and may) fill a whole book.  But as I reread my rambling, disconnected entries—and their generous replies—I am struck deep in my chest that the most important thing I learned, perhaps the most important lesson I have ever learned, is how much my friends and family—and even strangers—love me.

 How is that possible? Sick, boring me.  I can’t even go out to dinner anymore, much less make it to the theater.  Most days, a litany of symptoms exhausts me; I imagine just hearing about them drives most of you to drink at lunchtime (though some of you will secretly thank me for the excuse….and you know who you are!).

 Most importantly, though, I have learned that I had better listen when the likes of you people have taken the time to be so kind.

Day 5. Go Ahead, Murder Yourself.


Join me in committing a murder.

I’m asking you to be accessory to a crime; I’m also asking you to commit your own murder(s), most likely plural.  Most likely we will be joyful afterwards.

The idea of having 5 days left to live is abstract.  As you know, I don’t intend to die on 11/13/12.  But having to confront the idea of dying from so many directions this year has brought me to consider it from an entirely different perspective, one that finally put me in a powerful position over the last several weeks.

What if someone, or more accurately something, does die, but (as is true with vegan dinners) nobody gets hurt in the process?

What if the 13th becomes is a deadline for murdering, or killing off, the parts of ourselves that are unhealthy, or that aren’t serving us well anymore. I don’t anticipate taking off limbs, or even eyelashes, yet in the process we will chip away minute parts of ourselves, parts that don’t weigh any more than an eyelash, small enough not to cause injury, but large enough to show slight differences in character in their absence. These distinctions, for example, would cause the new “me” or “you” to react entirely differently were a new doctor foolish enough to assign one of us an expiration date.

Think about it.  The idea of killing off yourself in this way becomes appealing, right?  I’ll start.  Then, I want you to jump on.

Here are ten pieces and parts of me that I will murder over the next five days.  Won’t you join me?

—  my rigidity, which might be termed my “my-way-or-the-highway”-ness as well as my obsessive nature.

— my difficulty with staying with any single task until it is complete.

—  my tendency to look up the truth on the internet during family discussions, unless that’s what we seem to want to do.

—  my tendency to accept the first assessment the doctor makes as THE WORD, or THE TRUTH (the replacement for this tendency might be a mixture of the above tendency, looking it up, with consulting second opinions when necessary).

— my tendency to obsess over unnecessary fine points, frequently to avoid dealing with the crucial.

— my propensity to want things I cannot have.

— my selfishness.

— my tendency to worry about everything. 

—my poor social skills (esp. at parties when I don’t know anyone).

 — my impostor complex.

 My list feels like the ultimate rough draft, as though it would take 100 or more list entries to approach the topic with any real seriousness.  But if I am truly to jettison, to murder, my obsessive nature, I must commit this murderous assignment, take its tenets seriously.

f about you?  Has this blog made you think about making changes year (or do you need to go back and start reading from Day 365 to understand what I’m talking about?  Don’t be intimidated by length; I wrote nowhere near 365 entries, or even nowhere near 100 entries).  What parts of yourself will you murder?  Why?  Let’s’ talk about it.

Day 13. Trick or Treat? I’ll Take the Treat, Thanks.

Everybody was decked out in orange and the black yesterday at the doctor’s office. Where else would I celebrate Halloween? 

My mom and I were hoping for a very simple re-acquaintance audience at the new Vascular Surgeon, Dr. Cameron Akbari’s, office at Washington Hospital Center. He is not getting a nickname because my instinct tells me he doesn’t need one, kind of like Dr. Francomano. Dr. Akbari is such a lucky find. Tonight I am trying to figure out how I feel about what happened, and if my legs didn’t feel like a hurricane is exploding the power lines of my nerves everyplace, I would be kicking myself.  Why didn’t I go to him for the last three years, instead of those blockheads at the Johns Hopkins University?

I actually met with Dr. Akbari three years ago because my primary care physician recommended it, since, if the worst happened and an aneurysm ruptured, my doctors at Johns Hopkins would be no good to me an hour away (and that’s with no traffic).  Little did I know at the time that they would be no good to me even before the worst ever happened!

Seeing Dr. Akbari again helped take the edge off my worries; his easy-going, kind presence breaks all the stereotypes about vicious, shark-like surgeons. It was particularly nice to see him when I didn’t urgently need him! But let’s not let denial take over: I was there at the behest of Dr. Dreamboat, the pulmonologist, who wanted someone to have a look at the results of my recent Brain MRI/MRA, which I spoke about in my last post. I explained to him that I had a Dissection in my Carotid Artery, a sort of aneurysm that isn’t as severe as the kind I have in my belly, or the one I had in my leg, yet worrisome nonetheless). I had sent the paperwork in to Fairfax Hospital and called ahead on October 8th to be sure that both the report and the disk with the images would be sent ahead of time to Dr. Akbari, so that he could make a considered diagnosis.

Well, for my first trick or treat of the day, I learned that stupid Fairfax Hospital didn’t send the images of the MRI exam I had while I was in the hospital. Trick. Upon learning I didn’t have the images, most doctors would have sent me home and said, “Come back when you’re prepared.”

STILL, I was capable of explaining the issue, right? I told him I had a dissection in my left Carotid artery, enough information, I suppose, to get the ball rolling.

Meanwhile, Dr. Akbari’s nurses called Fairfax Hospital and got the report. Treat. While we were waiting, he sent me for a sonogram of my carotid arteries, so he could have a more immediate view of the dissection. The double treat was that the result was negative.  Or does that make it positive?  The woman who did the ultrasonography was an M.D., super-competent, so it was one of those (unfortunately) rare times when I was able to feel very secure about the results, which indeed were beautiful.  Not a thing wrong.

“Still, there is one thing that could be wrong,” she explained, as I sat up wiping off the warm sonogram goo from my neck.  There is something so….I don’t know….degrading about those moments sitting up dripping with sonogram goo. It is a feeling, I suppose, unique to those who have had a sonogram of the head, neck, or heart. “The problem is that the Carotid Artery doesn’t just begin and end in the neck; it shoots up into the brain, so if they saw a dissection, it could still be in the brain, and if that is the case, I wouldn’t be able to see it with a sonogram.”  Oh….Trick.

Sure enough, after I returned to Dr. Akbari’s office, he was able to read the Brain MRI report from the hospital. While he was still smiling his dazzling smile, it had taken on a note of the “I’m speaking to an idiot” about it. So he says, slowly “You didn’t have a dissection in the Carotid, Heidi.” Trick. “This is a pseudoaneurysm in the brain. And the trouble is, my expertise ends at the shoulders. For the brain, I have to refer you to a neurosurgeon.

Trick. Trick. Trick. 

Tricks are for kids, aren’t they?  You know the ones I mean, the sweet little ones with the shaved heads who look cute on telethons?  I wouldn’t look cute after brain surgery, with a prickly, shaved, fat head and a moon face.  Good Lord.  This isn’t looking good at all.

 I said to myself, “I’ll take a treat, please, God.”  I don’t want to point out the dearth of treats in my life at the moment, people.  I hate to bitch.  I haven’t been writing about the blood thinner I inject into my fat stomach every morning now and the related side effects that are not pretty in any way at all.  In the way of the North American culture of the 1950s, since I have not had anything nice to say, I have not mentioned a word at all about the blood-related messes I undergo. Use your imagination. I feel like I have a daily visitation of the stigmata.

Here’s the story with the aneurysm.  Turns out that between October 21st, when I posted last on this blog and got it right (about my pseudo-aneurysm) and October 31st, when I went to see Dr. Akbari, I completely forgot my diagnosis. That is, it went from pseudo-aneurysm to dissection in 60 mph or less (this hyperlink has a list of definitions related to aneurysms; to read about pseudo-aneurysms and dissections, scroll down to page two in the file). Perhaps I am being hard on myself to expect to remember the difference. It is fairly esoteric. Yet, I find myself frustrated when I “lose” knowledge I had firmly a few days ago without any awareness of it.  That is particularly troubling because I used to grasp knowledge firmly and have confidence that I never would lose it; it never occurred to me that my brain would turn all hole-y and sieve-like before I even reached the age of 50!

Anyway, Dr. Akbari gave me the report, which did help me to understand, and when you read the following crystalline prose, you will understand why. This is the  radiologist’s description of the problem in my brain, along with some pictures that should help with the anatomy:

An MRA imaging of the Circle of Willis demonstrates patency of the intracranial Carotid Artery. There is a broad-based outpouching near the junction of the petrous and cavernous segments of the internal Carotid Artery on the right, protruding anteriorly, suggestive of a pseudo-aneurysm.  Mild fusiform dilation of the contralateral internal Carotid Artery is identified on this level as well.  There is also mild fairly fusiform dilation of the cavernous segment of the internal Carotid Artery on the right.

 So, to split hairs, I was right about the dilation — a mild dilation does exist on the right side, but it is only a minor problem as compared with the patency, or the sort of bubbling out, of the intracranial Carotid Artery and the internal Carotid Artery.  But the end of the report (this is always titled “Impressions”) summarizes the “vascular abnormalities,” and then, to conclude, points out “There is no stenosis.”  When I looked up stenosis, I learned how important that statement is: it means there is no plaque in the arteries, no fat in there (no prime rib, no bacon, no cheddar cheese, pork roast, or, most certainly, no turduckey). When that is present (particularly with the previously described vascular abnormalities), the potential for stroke is high. Good God!  That is all I need.

Good luck, meat eaters!

The plan now? I have to make an appointment with the neurosurgeon (after I finally get a copy of the MRI/MRA images).  However, Dr. Akbari wouldn’t let us leave without saying a few words, and when you read them, you will understand why he didn’t merit a nickname:

“You are not a walking time-bomb, Heidi. Listen, I do this all day, and many times a day I tell people, ‘Look this is a very serious condition, and you need to be extremely concerned.’ That’s not what I am saying to you. Believe me. I would say that if it were true.”  I was so grateful for that comfort! “Now,” he added, “that isn’t to say that you do not need medical care. It is important that you see the neurosurgeon to find out whether you need a procedure, or how he wants to handle it, but this is a small thing.”  

Treat. I think.

Frankly, I was glad to take down the Halloween wreath this morning and put away the Halloween socks.  I am hoping that this year’s tricks are behind me and that I’ll be living in Treat City until my birthday….and beyond.

How did you spend your Halloween?