Buckle Up

 Whew.

It has been a while since I last posted, in all the best, boring ways.  I was practically cruising through my routine follow ups, my annual scans (other than the whole "yellow fever vaccine 10 days before my annual mammogram” thing, that enlarged my lymph nodes and required a follow up scan).  In fact, in my last meeting with my oncologist a couple months ago, she declared me uber healthy and looking great.

So I thought, maybe now is the time to circle back on my next reconstruction surgery.  At the time of my mastectomy, my body felt so chewed up and spit out that I couldn't fathom a larger reconstruction surgery than the over the muscle implant reconstruction that I went with.  I had considered a DIEP procedure at the time - using my own abdominal tissue to reconstruct the breast - but I just couldn't.  The magnitude of that surgery was too much.  But now?  I felt great.  Maybe healthier than ever, albeit with an extraordinary amount of discipline around food, veganism, inflammatory triggers, and more physical activity than I had been doing in the decade before.  So I met with my plastic surgeon's colleague, who specializes in the procedure, and we booked it for January 2023.

In advance of the DIEP, they needed a CT scan of my chest and abdomen to map out and check flow of my blood vessels.  The results came a few short hours later, while I was on a conference call.  Everything looked great, and normal, until...

    "There is a 4.6 cm x 2.3 cm x 1.9 cm ovoid calcified mass.... in the right upper quadrant along the             gastric antrum and pylorus, appears extrinsic to other organs, could be an exophytic GIST tumor or         carcinoid metastasis.  Recommend comparison with any priors and/or further evaluation/biopsy with         endoscopic ultrasound."

I found myself struggling to take deep breaths, and told my colleagues awkwardly and shakily that I had to drop.  I emailed my oncologist in a near panic. By the time the GI specialist finally called, I was very far down the rabbit hole, becoming a google expert on GISTs (gastrointestinal stromal tumors - a type of soft tissue cancer in the GI tract), treatment options, and likelihood of breast cancer metastasizing to the GI tract (unlikely).  My oncologist got right to work for me.  Surprisingly, we learned that it is hard to find GI specialists that perform biopsies through upper endoscopic ultrasound. It took nearly a week of her persistence before she was able to get me in at John Hopkins hospital, with the head of GI. My head was reeling.  I mean, what are the chances that I could have a second primary cancer at age 42, with no known genetic markers or risk factors? Worse, what are the chances that I could become metastatic to the GI tract, only 3 years after I was declared cancer free, when I had a complete pathological response to chemo and my lymph nodes were negative?  Everything was so up in the air.  I had so many calls, including with other doctors, a retired GI doctor friend of a friend (thank you!!).

On September 6th, I checked in at 11:00 for a 12:30 procedure.  I'd had to fast from water and fluids.  The procedure was so delayed, I had a raging headache by the time they took me back at 3:45pm, but I otherwise felt like my normal self.  Coming out of the 30 minute procedure, however, I felt horrendous.  I was nauseated, still had the headache, was lightheaded (thanks, anesthesia), and my whole body ached.  The doctor broke the news that unfortunately, the mass was so calcified they had a hard time getting the fine needle biopsy.  It was like poking a rock with a fine needle.  They were only able to get three superficial samples, that he was afraid wouldn't be enough and I would need other imaging or another manner of biopsy. On the way home, the chills started.  Womp.

When we got home, I added layers of clothing and was under our two heaviest blankets, I was on a heating pad, and Jay still had to turn on the fireplace (in 80 degree weather) and put a space heater near me to control my chills.  I could feel myself going down hill quickly, and when we took my temp, it was 103.3.  The on-call doctor told us to monitor overnight and keep continuous tylenol, but it became clear by morning that all was not well.  What had felt like an achy right hip that night turned into a deeper, sharp pain that made it hard to turn over in bed, and then it became impossible to sit up, sit down, stand, or walk without help.  And I was in a wheelchair by the time we got to Anne Arundel hospital, with level 9-10 pain. I likened it to active labor with my sunny side up baby. It was so excruciating, that I needed a puke bag after they moved me from the wheelchair to the bed.

And so the testing started.  CT scan #2, MRI, blood work to send for culture, blood work to run virus panels and check inflammatory markers, immediate antibiotics.  When the CT scan results came back, there were two interesting things:  (1) I had pneumonia, from aspirating during the endoscopy; and (2) the "soft tissue mass with coarse calcification previously described in the right upper quadrant adjacent to the gallbladder fossa now lies in the right paramedian upper pelvis.  The predominantly rim calcified coarse nature of calcifications allows benign etiologies such as an area of calcified fat necrosis to lie within the differential diagnosis."

I'm sorry, WHAT?!  So you're telling me there is a nearly 2" ROCK of a substance in my abdominal cavity that was in the UPPER RIGHT QUADRANT by my gallbladder on the 6th and in the RIGHT PELVIS on the 16th?! Did I mention it was my right hip that was in crippling pain?

I spent the next 5 days in the hospital, which quickly became a traumatic experience.  Because of the breast cancer and lymph node removal on my left side, I can only have medical procedures on my right arm.  I was on three strong antibiotics - two at a time - through IV for the duration of my stay, along with a cocktail of other pain medications, nausea medications, muscle relaxers... and four of my veins blew.  Four.  I've never had an issue with my veins, but EVERY new IV was so painful.  The meds burned or stung going in, so I started having a lot of anxiety around the meds, begging nurses to go slowly and piggyback with saline, but even the saline stung.  I also had blood work every morning, sometimes without success.  I had to have the last IV entered through ultrasound, and even that one blew by the next day.  I also had an attempted pelvic fluid extraction, and painfully learned there wasn't enough fluid to remove.  I was not sedated, only given some lidocaine to numb the surface of my skin.  We were no closer to answers about my hip, and the pneumonia was incredibly stubborn.  But I couldn't stay there any longer, so I decided to be miserable at home instead of the hospital.  I was in a bed for almost 4 days straight, not able to stand up or some days, move my leg.

Since returning home, I've continued to improve every day.  I can get up and move, cook, etc. for short periods of time, but my right pelvis is still inflamed and swollen and painful.  Imagine my surprise when yesterday, several days after leaving, I was notified of a new test result from Johns Hopkins.  I hadn't been there since the day of the procedure.  When I opened my portal, I saw that Anne Arundel had sent them my CT scan for a second opinion.  Hopkins pulled up my September 6th CT images, AND the images from a CT scan I had done in 2011 when I had a series of digestive issues and repeat gastritis.  To my great surprise, the findings said - are you ready for this? Follow the dates closely-

    "CT from 9/12/2011 demonstrated a 4 x 2.4 cm solid mass with minimal calcification in the right lower pelvis, same location as on 9/16/2022.  Although the size has not changed, the mass has developed increasing calcification since 2011.... 

Calcified mass in the right upper quadrant on 6/06/2022 is identified in the right pelvis on CTs dated 9/16/2022 and 9/12/2011.  Constellation of findings over serial examinations most consistent with mobile benign mesenteric mass such as solitary fibrous tumor, benign spindle cell tumor or inflammatory pseudotumor."  

Insert the "mind blown" emoji here.  First of all, I'VE HAD THIS MASS SINCE 2011??!!  But second of all, I'VE HAD THIS MASS SINCE 2011 AND IT HASN'T GROWN?!!! 

Omg.  What a roller coaster this week has been.  I have so many questions and grievances about this, but I was GIDDY after reading the updated report; I had more energy than I've had in almost two weeks.

So.  Next steps.  My oncologist is discussing with a panel of GI doctors at GW, where I had my cancer treatment.  My preference is surgical removal.  If, God forbid, it was actually a GIST, the treatment is surgery.  But also, I do not believe this hasn't caused me issues over the last decade.  I've been to doctors for myriad GI tract issues, pain issues, inflammation issues.  My lower back and pelvis tend to get achy easily, and I believe its current location is leading to my persistent (and sudden) pelvic issues now.  It is my right pelvis giving me the issues, and the right pelvis currently housing the mass, and the pain started when the mass moved after the endoscopic biopsy.

It took me several days of being home to get past the nausea and begin to move around a bit more.  My temp is still bizarrely elevated, even though I'm nearly done with the antibiotics.  I am on ice and ibuprofen and tylenol still, around the clock.  I'm sleeping in a recliner because I can't handle the bed yet.  

But each day is better than the last, and I have been completely lifted up from the well wishes and prayers of my tribe, including all of you.  I appreciate you all so much, and your willingness to show up for me whenever I ask it of you.  And to the family that visited me in the hospital, or perhaps more importantly, kept my kids distracted while I was stuck there - thank you. I love you all.