Tag Archives: Summer of Suck

Summer of Suck 2.0: a sort of sequel

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“So it was benign, right?”

“Well…it’s complicated”

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And so begins an awkward conversation with well-intentioned friends and colleagues. I know how to answer the question – sort of – but responding almost certainly requires me to veer into TMI territory. I am comfortable talking about what I have been through and what I face next. It helps me. But I am not a mind reader so I don’t always know how much people can handle or truly want to know.

If I have already told you too much, or if you were just being polite, I’m sorry…kind of. Not really.

I don’t know.

 

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Summer of Suck 2.0: My lucky day (finally)

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Last night, Dr. E texted me.

“Just checked. Pathology report not yet back.”

She knew I would be having my first post-op visit with Dr. S today and hoped to manage my expectations. Dr. E is thoughtful and kind like that.

The medical team had warned me that the report could take a week and I had been driving myself crazy, trying to decide what “a week” meant. Was it one week to the day from my surgery? Or perhaps one week from the day after my surgery to allow time for my excised tumor to be transported to the lab?

I opted not to bother the doctors or their staff with my pointless worrying. The report would arrive when it arrived. Nothing gave me the impression that the analysis of my tumor was anything but a priority.

So I arrived at Dr. S’s offices today expecting to have the dressings on my five incisions changed, to be weighed and to have a conversation about swelling and expectations for improvement. Dr. S’s PA J, who has been my go-to for email questions, thought all but one of the incisions looked very good. Just the one by my hip will need some extra TLC.

I told J about my appetite swings – from ravenous to unable to eat anything in the span of minutes – which she pronounced as normal for the post-op period. While I had a few days of pretty normal eating (just small portions), I suddenly found myself unable to tolerate much beyond applesauce and toast. And it showed when I stepped onto the scale: ten pounds lost, approximately two of which was the tumor.

Did I mention that the mass was enormous? I feel tumor-famous with Dr. S’s staff. Either that or they think I’m dumb and oblivious for not realizing I had a giant burrito in my belly. But whatever.

With my dressings changed, J called for Dr. S.

After a cursory examination of my exposed belly, he put both of his hands on my forearm and gave me the good news that the just-in pathology report revealed my tumor was NOT either of the worst possibilities (adrenocortical carcinoma or a form of lymphoma).

Instead, the mass was found to be something called a “oncocytic tumor with low malignancy potential.” I will need regular follow up in the forms of scans, but this was a good outcome.”You got very lucky,” he said, somehow mixing gravitas with a gentle smile.

Today Dr. S acted differently toward me than during our previous encounters. While I would never call him “cold,” he was clinical and didn’t waste a minute. I chalked that up to his life as a surgeon, his role as Chair of Surgery and the number of patients he sees each day. It didn’t bother me (at all) for I came to him for his expertise, not his friendship. Now I am grateful for not just his professionalism, but also his humanity.

As soon as Dr. S left the room, I burst into tears. All of the fear I had tried to keep in check finally leaked out via my eyes.

I’m waiting for J to email me the full pathology report [so I can google like a madwoman] but the reality is, I’ll probably crash before the message arrives. Recently I haven’t been sleeping well, even with the pain medication, but I am hopeful that this good news lets me relax a little.

Once I get through the next few weeks of healing, you should fully expect me to live like someone who just got very lucky.

Summer of Suck 2.0: Update from bed

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I’m home!

I 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 and 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 (update on that here). But I did want you to know that I am managing well and being cared for by friends and family.

For the not-squeamish, there are two pics below (including one of the actual tumor). If you are squeamish, do NOT keep scrolling. Continue reading →

Surgery Day

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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

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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

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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?

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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?

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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.

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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

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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 →

Summer of Suck 2.0 – Part Seven: White Knuckles

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Tomorrow morning I will walk to the subway, hoping no one jostles me and hoping that I don’t see anyone I know. I will wish for a cloak of invisibility.

My worst nightmare, only for tomorrow, is getting mugged. I’m worried about muggings not because that sort of thing is common in Williamsburg (not at all), but because tomorrow, for one day only, I will be carrying a large orange jug full of twenty-four hours’ worth of my own urine with me like some kind of psycho.

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I still have to figure out how to actually carry the filled jug. Using a brown paper shopping, like when I picked it up, will not be an option. Too heavy (sorry. So gross.). I suppose one of my many drawstring bags from past events will have to be sacrificed for the cause, to be unceremoniously disposed of later when the job is done.

 

Otherwise, it’s status quo around here. Things are dull. I wouldn’t say “normal” because there’s nothing normal about this type of anticipation. But not much is happening.

I have a follow-up appointment Thursday regarding my finger. It hurts each morning when I first wake up, but improves throughout the course of the day. My hope is that the doctor pronounces this as expected because I really don’t want to start another course of antibiotics.

Tomorrow I should also hear the results of my second round of hormone-focused blood work. Round one was “mostly normal?” Yeah, the question mark is the sound of Dr. E’s voice each time we discuss the findings. Only my cortisol was slightly off–just slightly enough that I had to have a three or four more vials of blood drawn yesterday.

Just a reminder: the results of the blood work won’t provide a diagnosis, only a treatment plan as far as the need to replace hormones (or not).

On Friday, I am scheduled to have my pre-op physical. The hospital told me to expect it to take up to two hours so I’m thinking of using a vacation day for that plus a trip to the DMV. Might as well stack the drudgery, right?

My drivers’ license expires on my birthday and NYS now requires a fresh vision test either at the DMV or at a participating optometrist. Between that, my desire for a new license photo, the need to update my address (oops, I’m late) and the fact that I’ll be recovering from surgery when it expires, now seems like the time to do it.

With one exception, I feel like I am managing my new reality a bit better since getting the relative certainty of a surgery date. Having the date in mind, has given me a clear timeline of what needs to get done and by what day.

But I can’t sleep much at night and that’s a drag. My mind won’t rest, wondering about what it will all be like: the incisions, that lousy feeling of being awakened from general anesthesia when all you want to do is rest, the pain, the diagnosis and what comes next. One of my doctors prescribed Klonopin and while I filled it, I haven’t leaned on it much so far. But perhaps now is the time.

 

Summer of Suck 2.0 FAQs