Update from bed

oI’m home! 

Definitely thought I’d be one of those people who wanted to stay in the hands of medical professionals for as long as possible but here I am, savoring the quiet a day privacy of home.

Thanks for your kind tweets and such. I don’t have much to share right now as the pathology report will take time. But I did want you to know that I am managing well and getting cared for by friends and family.

For the not squeamish, there are two pics below. If you are squeamish, do NOT keep scrolling.

16 cm long, more than 2 lbs

Surgery Day

I feel like I am on a roller coaster approaching the top of that first hill, and I want to get off.

But in lieu of that, I will get my tumor removed today. As you’re reading this, the operation may already be over. I was told to be at the hospital at 6 am – and you know I’m not a morning person so this should be interesting.

Wish me luck! I’ll update you when I can.

(this is a scheduled post)

Summer of Suck 2.0 – Part Eleven: What’s in My Bag

You know how US Weekly does a feature called “What’s in Your Bag?” where celebrities show all of the odds and ends floating around their designer bags?

This is something like that except not at all like that. Because the bag in question is the bag I’m taking to the hospital. For starters, it’s a beat-up, well-traveled half-suitcase (it looks like this).

Instead of Nia Long‘s Dior mascara, I will be packing six or seven of my most modest pairs of underpants to deal with never-closed hospital gowns.

Continue reading

Summer of Suck 2.0 – Part Ten: This is how I’m preparing for surgery

There’s today (Sunday) and then the next day, and one more day. Then surgery.

I keep wishing something exciting were happening on Wednesday – a vacation! Something wonderful! But such is life. Wednesday is going to be disorienting and painful. Thursday and Friday will probably be more of the same. It’s hard to think about so I’m trying to focus on preparation and my wonderful friends’ efforts to distract me.


Here is how I’m prepping for the big day.

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Having a spectacular dinner at Root & Bone with Adrienne. Continue reading

Summer of Suck 2.0 – Part Nine: Why does my heart feel so bad?

I usually start a new blog post with a strong sense of what I want to say and how. The words and their tone typically come to me as naturally as breathing. And I’m guilty of not proofreading most posts beyond running spellcheck because of my eagerness to connect with people through my writing.

Right now, though, I’m at a loss. This week, I have sat down to write a new post several times and although I have many things to say, the words remain a jumble. But I don’t want to wait any longer to post given the looming deadline of my surgery even if what I write isn’t the best reading experience.

Day by day, I’m learning that for me, the difference between happy anticipation and anxiety aren’t as large as I would have thought. There’s a countdown clock ticking in my mind that keeps me from sleeping at night and from focusing to the extent I would like during the day. I felt this anticipation before moving apartments and going to St. Martin with friends. There’s an eagerness to get to the date circled on the calendar–just no reward, really, once it arrives.

All too often now, I feel ill in a way that I’m not sure if physical, emotional or both. The heartburn, caused my the tumor squeezing my pancreas out of position, is real, but is the headache? Why am I coughing still?* Why do I feel so exhausted even when I do sleep? Why can’t I think straight?

Sometimes I chide myself for making too big a fuss over the surgery. But then I think that maybe I haven’t done enough to plan for the possible outcomes.

There were times during my father‘s last year of life when I looked back and realized how easy things had been–times I had thought were challenging in the moment were nothing like the scary present. And that’s what is on my mind right now: what if this is the easy time and life after surgery is worse, not better? What if this is my easy time?


*my general practitioner listened to my lungs on Monday. They’re clear.

 

By the way, the title refers to a Moby song that is stuck on repeat in my head these days.

Summer of Suck 2.0 – Part Eight: Why am I like this?

It starts at Reception.

There I am, trying to ingratiate myself to a woman named Lavinia.  I am late for what I think is my pre op-physical appointment (but subsequently realize is pre-admission which is Not The Same). I am late because instead of going to the Ambulatory Care building for my 9 am appointment, I went to the main hospital approximately six city blocks away.

And I didn’t just go to the wrong building. No. Before I realized my error, I took a guess at which NYU color pathway to follow to which tower to the north-not-south elevators and went to the 4th floor. It was there that I finally thought to look at the calendar on my phone where I had conveniently noted the location of my appointment. Which was at the Ambulatory Care building, not the hospital.

I walked the six or so blocks to the right building, sweating in the heat and humidity as I hustled past morning midtown traffic and the busy entrance to the Queens-Midtown tunnel. Honking cars, whistling traffic cops and damp ol’ me. I searched my phone while I walked, trying to find the right phone number to call to apologize for my lateness and stupidity but my call log is full of various unsaved NYU Langone phone numbers..

When I arrived, twenty minutes after my appointment time, Lavinia smiled anyway which I took as encouragement to become a giant, ingratiating suck-up and try to make her laugh with my terrible adrenal mass gallows humor. I tell Lavinia that my surgeon has promised me six-pack abs once the mass is out so I’m not at all concerned about my surgery.

Soon Lavinia, who giggled at my efforts, has passed me along to her colleague to make my copay. I joke about never knowing if it will be $25 or $45, and ask her to rig things for the lesser amount given that my Flexible Spending Account dollars are a distant memory. I tell her how my recent hospital stay, after I was bitten by a scared kitten, produced a statement totaling $31k. My goal for the day was no five-figure hospital statements.

Baby cat 20160818_120116

Not the biter

“I was hospitalized FOR A FINGER!” I exclaimed in horror and embarrassment, and soon this woman whose name I didn’t catch is laughing hard and bringing her cat-loving colleague into our conversation to ooh and ahhhh over the kittens pictured in my phone who did not bite me in a way that led to my hospitalization. Continue reading

Summer of Suck 2.0: FAQs

I thought I’d use this little lull before surgery to answer a few Frequently Asked Questions.

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Keep reading to see why I included this pic

Is the mass benign?

We don’t know and won’t have details until it’s removed. The surgeon will not do a biopsy because the mass is nicely contained right now. Puncturing it for a biopsy could release dangerous cells into my body.

So far, my tests seem to be pointing to a non-functioning tumor (meaning it is not making hormones like cortisol). While that makes my surgery prep easier, in that the doctors won’t have to replace the hormones before removing the mass, it doesn’t tell us if the mass is benign or malignant.

Update (9/15/16): my jug test results are in and they are also normal. This means that the mass does not seem to be producing hormones. Here’s what Merck has to say about that. I’m trying to take those stats plus many people saying that adrenal cancers are very rare as good news.

What is the mass made of? Continue reading