Details about Bryan’s Bilateral Pulmonary Embolism Situation

Plus a blood clot FAQ and a song list

Hey there! If you’re new here, this is a cancer update for my husband, Bryan — not my usual Wednesday newsletter. For the backstory, you can see previous updates HERE. If you’re here for the non-cancer content, I’ll be back on Wednesday with The Usual.

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Throughout most of this cancer experience I haven’t entertained much fear or thought of losing Bryan. There was a time at the beginning of it all that some anxiety and a fear of the unknown set in, but because his prognosis was looking good fairly early, I settled into a comfortable expectation that this is simply a bummer chapter within our Big Book of Big Life, and that it would be all over soon.

Then Bryan ended up in an ambulance on his way to the emergency room last week for some very concerning blood clots in his lungs that could have potentially killed him.

I didn’t love the sight of him being carried out of Fred Hutch on a stretcher.

I don’t think it’s exaggerating to say he could have died. My Worst Case Scenario Brain has been known to go immediately to dark places, but I think this was a genuinely big deal. I texted my friend for a reality check on this, and even she said (via text): “I’m with you in your fear. Sometimes you’re being a nutso Virgo. This isn’t one of those times.” 😂

Here’s a recap from a quick update I posted on Wednesday while Bryan was still in the hospital:

A couple weeks ago, Bryan started experiencing shortness of breath. The oncologist ordered an x-ray, which showed some fuzziness in Bryan’s lower lung, so antibiotics were prescribed for possible pneumonia. When the shortness of breath didn’t clear up after the round of antibiotics ended, the oncologist ordered an “urgent CT scan in case this is more of an infection or a blood clot.”

The CT scan revealed significant pulmonary embolisms (blood clots) in the upper part of both lungs, which was severe enough that they arranged for him to be transported by ambulance to the emergency room at the cancer center’s partner hospital. 

Five or six hours after arriving at the ER, and eight or nine hours after the CT scan, he was finally admitted to the hospital – this was Tuesday night. He’ll come home tomorrow, Thursday, if his vitals continue to trend positive.

Bryan was discharged on Thursday while still in danger of experiencing a fatal embolism (“It’s the second one that could kill you,” said one doctor). I had to verify this with the medical team, because I wondered why they were sending him home with an oxygen tank. 

Bryan, seen here enjoying his pure oxygen through tubing in his nose, shortly after getting home on Thursday. Also, my zinnias are blooming like crazy.

“Is the blood clot still in his lungs?” I asked. 

The answer is yes. Bryan is on a high dose of blood thinners, and it will take some time for his body to break down the clots. I mean, yay to the body for healing itself, but I would have preferred a Blood Clot Zapper to clear it up before heading home.

Two Oxygen machines were delivered to the house – one the size of a carry-on suitcase, and a smaller portable unit he can wear as a crossbody bag. These machines don’t have oxygen tanks in them, but they convert the regular air into pure oxygen. 🤯 I’m continuously amazed by health technology.

The suitcase-size oxygen machine stays in the bedroom and has enough tubing to let him roam throughout the whole house.

Blood Clot FAQ

Here is where I’ll attempt to catalog many of the questions I asked the medical team and passed along to friends and family who asked. I’ll preface this by stating the obvious disclaimer: I’m not a medical professional and this is not medical advice. The following FAQ is based on anecdotal experience and what I recall from conversations with the medical team at the University of Washington Medical Center.

What caused the blood clot? Was this a side effect of the chemo?

The medical team has been clear that blood clots aren’t a side effect of the chemo treatment, but a common risk for anyone with cancer. 

I started to google a little more information about this, but the blood clot/cancer information was giving me anxiety so I stopped.

[2024 update: We later learned from the pulmonologist that clots are a common side effect post surgery, and this was likely the source.]

How bad was it, and how do they track it?

Embolisms are categorized as massive (very, very bad) and sub-massive (not super bad). Bryan’s bilateral (both lungs) embolisms were considered sub-massive. 

One concern for pulmonary embolisms is the strain it puts on the heart. If enough oxygen isn’t getting to the heart, the heart becomes strained trying to pump blood out to the extremities. Bryan had swollen ankles, so this was a concern.

To check this, he received an echocardiogram of the heart while in the hospital, which showed slight strain, but nothing too concerning. He also had an enzyme tested several times called Troponin, which is known to be elevated when the heart is strained. It started out high, but trended downward, which is good.

Now that he’s discharged, what are the next steps in terms of follow-up?

Recommended follow up is another CT scan within 3-6 months to see if the clots have cleared up, plus his regular follow-ups with the oncology team. Basically, they keep an eye on it.

Any other questions?

If you’re curious about anything else, I’m happy to share what I know.

Today’s Infusion Appointment

The good news is, Bryan’s oxygen levels have improved. They had gotten as low at 87% prior to being admitted to the hospital, but today they are ranging between 94% - 97%. The oncology team said he doesn’t need to be on continuous oxygen as long as his levels stay above 92% at rest and above 90% with exertion. He’s also been cleared to exercise again, as long as he maintains these levels.

Despite this embolism scare, he was cleared to receive his chemo infusion today. This is his eighth infusion overall, and his second without the Oxalyplatin, which is the drug that causes the neuropathy side effects.

Here’s a short video we recorded on our way in today:

Oxygen Playlist

One of our silly coping strategies this weekend was to think of songs about breathing air or oxygen. 😂 So far we have:

• (Tell Me How I’m Supposed to Breathe With) No Air - Jordan Sparks & Chris Brown

• Any song by Deep Sea Diver, but my favorite is Eyes Are Red (Don’t Be Afraid).

• Any song by Air Supply, but I’ll go with Even the Nights Are Better.

• (All I Need Is) The Air That I Breathe - The Hollies

• Breathe (In the Air) - Pink Floyd

• Breathe - India Arie 

Songs that are breathing/air adjacent: 

• Space Oddity - David Bowie

• In the Air Tonight - Phil Collins

• Anything by The Airborne Toxic Event, but I like Sometime Around Midnight

• Breathe Me - Sia

What songs would you add to this playlist?

Gratitude

I want to thank you, as a reader of Pretend You’re Good At It, for your continued support and encouragement throughout our cancer experience and through these updates. Your comments have been especially thoughtful and more meaningful to me than I expected, considering I’ve never met most of you in person. I love this little community and the people I’ve met here, so thank you for your presence.

p.s. When I text about Fred Hutch to people, my phone usually autocorrects to Fred Butch or Fred Bitch, and I kinda love it.