A Not-So-Funny Comedy of Errors

It's been a weird, somewhat wasteful, and very misdirected week.

Based on texts, emails, and social media posts, most of you probably have most of the story. But since it was confusing for me, Mike, and the medical professionals, and since I'm still getting lots of questions, here's the full update on my week so far:

Backing up a bit, I've been feeling "off" for a couple weeks. It started with some annoying-but-not-bad back soreness. Probably just age/fitness/full life stuff, but it reminded me of the back pain I had in nursing school. Back then, I wrote it off as "nursing school-itis," in which one experiences symptoms of each major disease studied. At the time, we were learning the cardiovascular system, including that in women the signs of a heart attack are not always the classic chest and left arm pain. Sometimes back pain is a sign. I was having back pain, but I'd had a recent physical without any risk factors for heart disease, and, ultimately, didn't have a heart attack. In retrospect, it was a symptom of the cancer we'd discover several months later.

Anyway, this feeling of "something's not right" has been growing over the past week, along with my fatigue. It's been frustrating and scary. Last Saturday night, I started having abdominal pain. It got worse on Sunday afternoon, so we went to the Emergency Department after the Super Bowl. Through the pouring snow, which was beautiful.

We did a lot of waiting, during which time I took the new cool selfie: legs and feet.

At the ED, they decided on a CT scan. The radiologist saw a 4cm solid mass next to a 10cm abscess (sack of infected material) in my left pelvic area. I didn't have symptoms of infection, but this is concerning because if it ruptured and that material spread all over, I could get REALLY sick.

They consulted with the on-call surgeon (who I know and trust - it's so nice to work where you get care). He said it was too complex, especially with my ovarian cancer and several previous related surgeries, and it would be better for me to go to the hospital where my gyn oncology surgeon works.

However, that hospital didn't have a bed for me until morning, and the ED was slow, probably due to the snowy night. So Mike went home and I stayed the night in the ED. They mostly left me alone, so it was reasonably restful.

Monday morning I had my first ambulance ride! No emergency, no lights and sirens, just transport between hospitals. Still snowing, but the roads were fine. And, if you can believe it, I didn't take a picture! I was pretty tired. We can also blame that on low blood sugar since I hadn't had anything to eat or drink since 4pm the night before.

Once settled in my new room, I waited. And waited. Mike came mid-day to wait with me. My surgeon and his team reviewed my case in between their scheduled surgeries. They decided it would be best to have Interventional Radiology (IR) drain the fluid collection before surgery. Then we'd know if it was infection or something else - like cancer.

All day we waited for IR to fit me into their schedule. Which means I couldn't eat or drink. I was getting pretty thirsty!

At 7pm. it was decided that they'd do it Tuesday, probably in the morning. So I was able to eat and drink, and REALLY enjoyed this delicious smoothie.

Late morning on Tuesday, we learned that IR wasn't going to do the procedure because they couldn't see any fluid collection on the CT. Hm... miracle? Fun to consider. But, in the end, a mistake on the part of the ED radiologist, who misread an area of enhancement and/or my colostomy as an abscess rather than inflammation or old surgical changes. He or she hadn't compared my scan to previous ones (sometimes the on-call rad is reading scans from home and cannot access previous images). 

This led to getting more images transferred from one hospital to another, and multiple docs reviewing my CT scans from the past year. Final determination: no fluid collection, but there is a 5-ish cm mass (cancer), and inflammation from the mass in the area. The pain is from the inflammation, which is affecting part of my small bowel. 

This is all stemming from one of the areas we've been watching since I had a recurrence last July. Happily (amazingly), no other areas were visible on the CT, so the Lynparza has been effective in other areas, just not in this one.

{BTW, don't worry, my docs will make sure the misread gets back to the right people. and I work with their co-workers every day, so I may bring it up - in which case, they'd probably review the images with me, which I'd really like.}

So, again, I could eat and drink! Such luxury! And still LOTS of downtime to enjoy the city view from my room on the 11th floor.

I also did tons of sleeping because we were managing my pain with IV dilaudid (a narcotic) and that made it HARD to stay awake and concentrate on anything. They kept me until this morning for pain management and observation. Even though the original diagnosis of abscess was clearly incorrect, they wanted to be super sure before sending me home. This morning we switched to regularly scheduled doses of ibuprofen with dilaudid only as needed, and that made a big difference, so now I'm having almost no pain and feeling like I'm ready to re-enter the world.

Mike picked me up at 10:30am and we high-tailed it out of there. Again, we were accompanied by snowfall. We made a couple stops for food and meds, and then I went to bed for a few hours of uninterrupted sleep.

Since I'm feeling well, I plan to work a half-day tomorrow and all day on Friday. As long as I'm not in pain, nothing is different today from last week, other than knowing that there's a rogue clone of cancer. And I'm glad we know now instead of in a month (when I was scheduled to have a CT), because we can act before it gets bigger.

Overall, the hospital stay seems pretty unnecessary. But the ED visit was justified. In hindsight, the best thing would have been to listen more closely to my body and have had the CT through normal channels last week. That would have avoided all this hubbub. Oh well.

What's next is still TBD. Chemo for sure - probably one I haven't had before plus one of the original drugs I had, which worked really well initially and BRCA mutations (me) are typically "exquisitely sensitive" to this type of chemo. The question is whether we do surgery right away or after I've had a few cycles of chemo. I'm leaning toward chemo first, which would make surgery easier or even unnecessary (assuming the chemo works). I'll continue talking with my docs this week and next and we'll get a plan in place.

I'm doing OK with this. One of the perks of being in this chronic situation is facing familiar territory. I've done these things before. They're not easy, but they're often effective, and they've bought me more years than initially anticipated. And new treatments are being developed all the time, so I feel like I still have several options open to me. Monday, my surgeon, who we used to call Dr Doom & Gloom because he wasn't very hopeful initially, seemed confident that I will have the years I still want out of life.

Last night was kinda rough, both with pain and the emotional fallout that comes with news of a recurrence. But I keep re-centering on my trust in my sovereign God who is in control of this. I know Christ is greater than my cancer and I've seen so much good come from all of this. I'd love to be strong and healthy again, but I'm OK with this, too, in large part because all of you love and lift me up with your prayers and encouragement and love. The Bible says weeping may endure for the night, but joy comes in the morning, and that was definitely true for me today.

So thank you again, everyone, for all of your love and support! We appreciate you so much.