Tag Archives: tumor

Good news. And yet…

Yesterday was my most recent CT scan. As I mentioned before, I’m slated to have scans every three months for a year.

I prepare myself for the waiting, and yet I still find myself bewildered by the actual experience. In situations like mine, appointments are more suggestion than commitment. It’s the trade-off for accessing a world-class specialist, and for him offering to review your raw test output with you in real time, same day. It’s the knowledge that a patient in my situation will wait pretty much as long as is required to get whatever answers and comfort are available.

There is much variety within the waiting. Am I waiting in the wrong place? Did I arrive on the wrong day? Did I fail to prepare? Or is someone simply out to lunch? Continue reading

Before and After

Yesterday was my first abdominal CT scan since the tumor was removed in late September. The results were good: no sign of any tumors elsewhere.

Yay!

If you’d like to hear more about the scan, there’s more beneath the fold, including not-gross before and after pictures.

(the gross pic is here)

Continue reading

My New Year’s plans involve a giant kiss off to 2016

I had just assumed that 2016 would end on one high note – the Bowery Collective‘s annual festivities. And I would have been perfectly content to do so. It’s a beautiful, fun gathering with amazing food and drink.

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12/31/15

But then, one of my friends from my July vacation asked “any interest in going back to Saint Martin for New Year’s?”

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Summer of Suck 2.0: a sort of sequel

“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: Did I just learn how to meditate?

I sat in my wheelchair wearing two hospital gowns – one open to the back and one open to the front like a makeshift robe. Underneath, there were giant, disposable, hospital-provided granny panties and and an ink scribble on my belly, pointing to the location of my tumor.

A nurse gave me a cap to cover my hair. Then, it was time to go. We pushed through the big stainless steel-covered door leading to a hallway full of operating rooms. The door gave me a strange flashback: my heart raced exactly as it did when I rode through a rickety traveling carnival haunted house as a teenager. Continue reading

Summer of Suck 2.0: Now what?

You’re might sick of reading about my Summer of Suck but hey! This is my blog.

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Today is day eleven post-op and I’m feeling OK. I go back to the surgeon again later this week.

Strangely, I think I felt a bit better around day five than, say, day nine. Apparently recovery isn’t a linear process. My chief complaints are basic: fatigue and lack of appetite. Both of these are better than pain, I guess.

A lot of my life was in limbo these last six weeks and now I’m left with the “What Next?” question.

A much-anticipated trip to Italy was postponed. We hope to reschedule the mother-daughter jaunt for Spring 2017.

I’m missing two weddings in LA including Matt’s and I’m very sad about that.

It looks like I can go to LA for this Bon Iver show and perhaps to DC for this Sia show (I have tickets for the Brooklyn show and am looking for friends to join me, hint hint).

I just booked my first post-op business trip. Am I up to it? (no)

Do I dare try to squeeze in a vacation before year end?

Is it too soon to talk to Mom about how to avoid Christmas being a disaster?

I realize that these are nice problems to have, of course. Just have too many thoughts in my head right now. Thanks for all your love and support, particularly of late.

 

Update: ha, ha! Everything is terrible. None of that went according to plan.

Summer of Suck 2.0: My lucky day (finally)

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

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

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

Summer of Suck 2.0 – Part One: I have an adrenal mass

This is kind of a long story, one that doesn’t yet have an ending so I am opting to break it into parts. Here is Part 1 of who knows how many.

I’m not a Broadway person (other than this really) but recently, I keep find myself rewriting the lyrics to that famous song from Rent.

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But instead of “minutes,” I’d say “blood tests, CT scans and doctor visits” because for the last two weeks, that has been my life.


Things were looking up, mostly.

I went on a fabulous vacation with friends. Though hard, I survived a year of sad anniversaries. I moved to a shiny new apartment and had a trip to Italy in my immediate future. Continue reading