bad news, cancer, doctors, ER, good news, hospital, it's gotta get better right?, Kaiser, kidney, liver, metastasis, oncology, pain, recurrence, silver lining
Well friends, here we are, playing “Good News/Bad News: The Ultimate Cage Match.” Or something.
First, the background.
On November 1st, the day after Halloween, I started feeling some abdominal cramping and very vague, fleeting nausea. I chalked this up to eating 2 of those tiny boxes of Nerds from Emmie’s Halloween candy, after not having had that kind of processed sugar in a very long time. It sort of persisted for the next few days, and I called it into my oncologist to be the good little symptom-reporter that I am. They told me I was fine on Tuesday morning. By the afternoon, the nausea had increased so much that I called again and they told me to take Zofran if it got bad. By the end of Tuesday, I honestly felt fine and went to dinner with a friend from out of state.
In the middle of that night, I felt like I had overindulged too much at dinner (I had chicken and delicious endive in cheese sauce). It felt like the worst indigestion ever. By 3 AM, I was up and hanging out in the bathroom, desperately wishing for something, anything to happen, but nothing ever really did. By 7 AM, I was curled in the fetal position on the bathroom floor, still somehow convinced that this would pass and I would be better in time to see my 8:30 AM patient (because indigestion always passes!).
I called my oncologist promptly at 8:30, when they opened, and the receptionist promised me a call back from the nurse “when she was done with her other patient.” 10 AM rolled around and I called them back, pretty desperate for something, anything to happen (I didn’t know it then, but this was very good foreshadowing for what was to come over the next few days). My oncologist was out until next week, so they needed to talk to the oncologist covering for him. After the receptionist figured out I was in severe pain, she told me to go the ER. I totally did not want to do that (it’s just gas! I’ll feel so silly!), but she insisted. Then she told me I either needed to find a ride or they would send an ambulance with sirens blaring and lights flashing (I was not allowed to drive myself). Boo.
Luckily, my wonderful friend Caitlin answered her phone and was just leaving the doctor’s office herself. She and her two boys came immediately to pick me up and take me there. She took the boys to a sitter and promised to return (angel).
As I stumbled through the ER doors, hunched over and clutching my belly, I finally admitted to myself that perhaps I was in worse pain than I had been willing to admit. The triage nurses were great and got me right in, which was nice, since I was again fetal, this time on the lovely ER chairs.
From here on out is a little blurry, since everything took place in hospital time. At some point they gave me IV Dilaudid, which actually DID work for this time (hallelujah!) and it instantly took away my pain, even though I felt like I was very loopy for a short while. At some point they also took be back for a CT scan. If you ever have to have a CT scan with iodine contract, you should know that it kind of feels like you are peeing yourself. You aren’t, but it feels oddly that way. I’m here to help.
Caitlin had come back before all of this because she is magic and super fast, so we did a lot of waiting together. I’m pretty sure our wait time for the scan results was in the hours, but I was on very good drugs, so I don’t really know. However, I do know that both the ER doc and the nurse each asked me if I had any previous scans to compare to, so both Caitlin and I felt like this was not a great sign.
Finally, sometime in the afternoon, the doc told me that the scan showed 3 shadows on my liver and 2 on my right kidney. Given my history, etc, etc, these were likely new metastases. Fuck.
It seemed like my liver was what was causing the issues, made a plan to admit me overnight, give me some steroids and check my liver again tomorrow to see if that helped. Okey-doke!
I went inpatient upstairs about 7 or 8 PM or so (I think), by which time I was off the IV dilaudid and taking oral Norco/Vicodin and doing fine, thankfully. I asked the nurses about the steroids, since the ER docs had said they wanted to start that 3-4 hours earlier. Confusion, delay, unclear communication, several more hours later and I found out that they did NOT want to do that anymore. OK. So.
So then I stayed the night and we just basically waited around all day Thursday to, I don’t know, talk to a doctor or something? They kept giving me pain meds, which was lovely, but I wasn’t really sure what was happening. AT ALL. At some point Thursday afternoon, I did get to speak with the Kaiser hospitalist, who was very nice and very competent, just not a specialist in this situation requiring the most specialized specialist. We did have a good conversation with him, though, and the first half of the conversation left me with some hope that maybe the shadows were NOT cancer! But then I asked him about that and he kinda shot that down, without actually committing.
Even though it was a good conversation that left us more hopeful (liver numbers were never scary high and were coming down already), the upshot of it was that all we learned was that I would be discharged that day. No real explanation for the pain (probably liver, but…?), and no plan of care (like, when should I start to feel better? What symptoms would be really concerning?). Even the nurse couldn’t help. As Peter and I stood in the elevator on our way out, we were both thinking, “We’re just going to be right back here over the weekend.”
Fast forward to Friday. Pain is still present, but not as terrible. I went to work and didn’t even need any pain killers… at first. By noon, I was done and needed to take my meds and nap, so I went home. (Thankfully, my mom flew out as soon as she heard, so she was able to drive me home).
This is also when stuff started happening. I was pretty pissed that no one could tell me what was going on, nor did it seem like anyone was even working on it. I had called my oncologist’s office while I was admitted because for all I knew, they didn’t even know I was there (they totally did, though).
That’s when I called in the heavy artillery.
When we left Memorial Sloan Kettering in September, Dr. Postow was very clear that my relationship with their office was not over. He would consult with my treating oncologist and I could always call with questions. If ever there was a time when I needed consulting, this was it! When I talked it over with the nurse, even the receptionist, they were aghast at the way the Kaiser office was working. The nurse even coached me on what to say to the Kaiser staff, including saying “this is embarrassing for you.” I of course can never be that mean, though I was stern (for me). Kathryn, the nurse and my new bestie, called me later and told me how she had read the Kaiser staff the riot act. Luckily, she did preface it by saying, “This probably isn’t your fault, but…” I could tell she was pretty worked up on my behalf, which was nice, honestly. Because all my calls with Kaiser until that point totally seemed like they were willing to accept that I was in pain and there was no known reason for it.
***Very important side note*** The main reason why I was so insistent on getting a probable cause was because the drug I’m on, Yervoy, can cause really severe organ failure and death. It’s an autoimmune drug, so the whole goal is to make it attack your body, but sometimes it goes overboard and tries to kill important things. Like your liver. So, yeah, I kinda wanted to make sure I wasn’t going into liver failure. Also, I had been scheduled to get my second dose of Yervoy that Thursday (remember?), and I had no idea if that would be rescheduled or if it was totally off the table now.
OK so, after many phone calls and lots of love towards Kathryn, the Sloan Kettering nurse, I finally got a call from the Kaiser doc on call that day. Kathryn had already said he seemed like he knew what he was talking about, so that was very reassuring.
The bad news from the phone call was that those shadows most likely are cancer. Which sucks. 5 new large mets in 2 organs that are new since July (my last full-body scan). Crap. The pretty good part of this, though, is that the pain is probably from the Yervoy attacking the cancer in my liver. So yay! At the time, I felt better about getting that bad news than any other bad news I’ve gotten in this journey, mainly because we are already doing exactly what the next step would have been. Also, even though those bastards are pretty large, I have no idea when we would have caught them without this scan, since I had no issues prior to this. I do really want another full-body scan soon, though, since who knows what other shit might be lurking in my body.
So there’s the bad news (more cancer) with the silver lining (drugs seem to be working and I will keep getting them). When Yervoy works, it can really, really work in some people. If you are the praying type, or even if you want to send out a specific good intention, please pray or send juju that the Yervoy will shrink these tumors down to nothing.
In the meantime, I am determined to live my life as normally as possible. I’m still planning on going to Orlando to present at our national conference, and to go to Harry Potter-land, too. However, I’m now looking into renting one of those awesome old-people moto-scooters while I’m there, just in case my fatigue and/or pain is impacting me. I don’t want to waste precious energy walking when I could be riding the rides! …and seeing presentations, of course!
Much love to you all! Bonus points to those who made it to the end!
lise menn said:
I hope so much that you can get thru this stage, go to Harry Potter land and ride on everything!
Me too! I realized I probably need to get the OK from my doc to go, so I will ask tomorrow.
Lisa G said:
I’m sending good ju-ju. I did want to mention a couple of things.
You know I’m not a dr. or Kaiser fan. So if you need someone to be the bad cop, I am waiting in the wings with my billy club. I have no problem being aggressive, especially if your health or comfort are on the line.
Please contact Universal before you go. They should give you and your family a pass to skip to the front of the line if you are in a wheel chair or some such device. There aren’t very many advantages to having health problems. But getting to skip to the front of the line in most amusement parks is one of them. Take advantage and enjoy!
Kick ass, Yervoy!
Jennifer Secrist Goran said:
Shannon, you are so brave and amazing.. you inspire and wow me constantly! I definitely sending ‘juju that the Yervoy will shrink these tumors down to nothing’. You are in all of your fellow dancers thoughts and well wishes. Stay warm and safe and we hope to have you back with us when you are up to it. Love, love, love. Jennifer and the whole Tribe Nawaar crew (Spencer and kitties included, too!)
We are sending ju-ju prayers your way at Austin Heights Baptist Church per Jesse Sams.
Vicki Dare said:
Prayers coming your way!
Annette Martinez said:
Lifting you!.. sending love and healing light.. good ju-ju.. prayers .. loving and healing thoughts..
You are doing it right.. Keep your power in YOUR CENTER!! Not in the doctors chart.
Much love to all