The Humpty Dumpty of It All

A wee explanation about where I've been... and an invitation to join me online tomorrow night for a live update

Humpty Dumpty had a great fall

Hi, friends! I apologize for my radio silence - it certainly was not my intention to go nearly two months between updates. But one week after my last update, my husband Paul fell headfirst down an entire flight of stairs at our home. It was horrifying, to say the least. He severely fractured his left shoulder blade and broke five ribs on his left side, and we both realize how easily it could have been much, much worse.

Paul in the ER after he tumbled down the stairs

It turns out, though, that if you break more than three ribs, they will hospitalize you due to the risk of developing pneumonia. He was in the hospital for three nights, which was tough for both of us.

Paul had still been taking care of the house and the dogs and, to some extent, me, as I continued to recover from my spinal surgery. Additionally, the same day he fell, I started a whole series of Big Deal medical appointments of my own; I had also just started my new systemic treatment (Votrient) and was starting to deal with side effects from that.

We were both so glad when he was came home and we could take care of each other, in our own slow way. It was just good to be in the same place, together, two broken people trying to take care of each other.

In the beginning, Paul dealt with significant pain, and, with it, a lot of fatigue and slowness. But he soon began feeling better and better, and at today’s orthopedist appointment, he was told that he is essentially healed. Woohoo!

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Humpty Dumpty’s blood pressure bottomed out

A little more than three weeks after Paul’s fall, I ended up taking a turn in the emergency room, despite my absolute, stubborn commitment not to go there or to be taken there.

I had been dealing with worsening fatigue that whole weekend, but I chalked it up to my cancer treatment (Votrient), since fatigue is the number one side effect of that drug. I thought I might also have anemia, which always adds to my fatigue. Then on Sunday morning, I fainted (and landed face-first on the hardwood floor in our bedroom). Again, I figured that was due to anemia or possibly dehydration or maybe both.

I went back to bed and stayed there the rest of the day, mostly sleeping. I was too fatigued, drowsy, and out of it to do anything else (other than stubbornly refuse to let Paul take me to the ER). But then that evening, he discovered blood in my stool (sorry for TMI), and at that point, he called the on-call oncologist who told him he needed to get me to the ER right away.

By then, there was no way for me to get myself down the stairs, let alone out of the house, due to my fatigue and lightheadedness. So Paul called 911 and the EMTs arrived almost immediately and began taking my vital signs.

My blood pressure was 69/37, at which point, I became terrified and was so glad I was about to be on my way to the ER!

It turns out that if the ambulance brings you to the ER with a BP of 69/37, you will be taken straight to something called the Resuscitation Room! I was glad to be there, even though the name of the room was a little scary. It turned out that, even though I had no abdominal pain at all, I had a gastrointestinal bleed. One of the tumors in my liver had infiltrated my duodenum (the upper section of the small intestine), causing a bleed. I’ve been on blood thinners for years, which puts me at a higher-than-normal risk of hemorrhaging. And it turns out that Votrient can also cause serious bleeding (yikes!)

Interventional Radiology (love those guys!) was brought into figure out what to do, and they immediately got to work figuring it out. They ended up doing the same procedure they did to my hemorrhaging liver tumors in March 2018 - an emergency embolization - and, just like then, their procedure stopped the bleed. It was an enormous relief.

Early the next morning, I was moved to a regular floor (on the oncology unit). I recovered from the bleed and the embolization quickly and well, and I was expected to go home 48 hours later. Before that could happen, however, I developed new, severe pain in my right upper abdomen. My medical team ruled out a rebleed (hallelujah!). They then spent the next several days running all kinds of tests to look for the cause of my pain (as well as the cause of my oxygen desaturation, which started the day after the new pain). They ruled out a bunch of scary options and then, after 10 days in the hospital, I was sent home with no answers but a new painkiller regimen and supplemental oxygen.

Trying to recover from the deconditioning that happens with a 10-day hospitalization is no joke. It’s been slow going, but I now seem to be making progress every day. I have in-home physical therapy, in-home occupational therapy, and in-home nursing care. I’m pushing myself a little bit more each day, an my energy and stamina are growing bit by bit. My pain is mostly well-controlled and I’m spending less time on supplemental oxygen each day.

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Humpty Dumpty will be doing a TikTok LIVE

There is so much to share beyond these two emergency events and hospitalizations, but every time I’ve thought about trying to write it all out (or even any of it), it just all feels so overwhelming. So I’ve decided to share in a different format this time.

The night before my spinal surgery in August, I started a TikTok channel (believe it or not!). As with the focus of this Substack, the focus of my TikTok is what it means to live with and beyond a stage 4 cancer diagnosis. I love TikTok, and I’ve really loved connecting with the cancer community on TikTok (#cancertok).

Now that I feel ready to try to share my latest medical updates and decision-making with my various online communities, I’ve decided that rather than trying to update in multiple places, I’m ready to do my first ever TikTok LIVE. As with Facebook Live, people can ask questions and make comments. I feel like this format will make it a bit easier for me to share my latest update as well as clarify in real time anything that needs clarifying.

My TikTok LIVE will happen on Tuesday, November 8, at 7:00p, for about half an hour. It will be a chance to quit thinking about Election Day for a little bit before results start rolling in (I hope all of you will have voted, of course!). You don’t have to have a TikTok account to watch the livestream. (I do intend to continue to update here on Substack, and I will try really hard not to let another two months go by first!)

@dr.staceydukeYou can be hopeful even after considering all the facts. Hope is NOT the same as denial and it certainly isn’t the same as being relentlessly, unrealistically positive. Hope is the birthplace of resilience. Metastatic cancer grows, multiplies, and spreads - and hope can, too. #cancertok #stage4cancer #cancertokfamily #rarecancer #leiomyosarcoma #sarcoma #hairkittykitty #cysterwigs

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Okay! So that’s what’s been going on these last couple of months. I hope some of you can join me live on TikTok on Tuesday night.