Hey all! Sorry it took me a little while to post an update, I had some other things come up and figured it would be easier to just do one slightly longer post. So anyway, here we go. The week after Thanksgiving, I woke up on Wed morning and noticed that I had a couple of swollen lymph nodes that were pretty tender. I normally don't have any issues with them, so I thought it was a little strange. I also had some pretty excruciating back pain that popped up a couple of days before that for no reason that I could think of. Anyway, I was due to go to the cancer center the following week for blood work, so I figured I'd mention the nodes then if they were still bothering me. I woke up Thursday morning to get ready for work and almost passed out when I walked across the room. I felt like complete shit, so I called in to work and went back to sleep after taking a double dose of my steroid. I slept until almost four in the afternoon. I felt absolutely horrible. I didn't do much else that day and was planning on trying to go to work Friday since I had gotten so much rest. Ha. I had good intentions at least... I woke up at around 3 or 4 am and knew I wasn't going to work. I was going to go in to the cancer center when they opened because I felt even worse. So I tossed and turned, and waited until they opened at 8 so I could call and see about going in. They told me to come right down, which I did... and thinking back I probably shouldn't have been driving, but I made it in one piece. I ended up seeing a NP that was new to me, and she was super nice. They started to get my vitals and my blood pressure was in the crapper (thanks adrenal insufficiency!), and apparently I had a 103 degree fever... which is a big no no, especially for a cancer patient (note to self, check temp more often!). With the fever and the swollen lymph nodes I was told that I was being sent over to the ER, and that they would do a CT scan and blood work to see if they could figure out what was going on.
So, on to the ER I went. They did blood work, and then blood cultures to check for sepsis, as well as give me bolus after bolus of fluids to try to raise my blood pressure. They apparently didn't believe me when I told them that fluids wouldn't make a difference and that I needed steroids to raise it. I had a scan of my pelvis done, and was told that since the blood cultures take at least 48 hours that I was going to be admitted. My parents were there by this time, and I was appreciative of the company, even though I felt horrible and was sleeping quite a bit. They told my parents they were taking me to room 250... so I was a bit surprised when they actually took me to ICU. Apparently my blood pressure was low enough that they thought I'd make the nurses on the main floor nervous, so they sent me there (I was running around 76/44). Turned out to be ok though because I LOVED my nurses in the ICU... especially the one I had on nights. She was amazing. And I actually talked with her quite a bit since ICU was on the slow side, and I wasn't sleeping at all by the first night. They had me on vancomycin and zosyn "just in case" I had sepsis. Plus they finally started me on stress doses of SoluCortef (hydrocortisone) to help with my BP. So I was getting 100mg of steroids every 6 hours for the first day... definitely no more sleep happening. Mom and dad took Dagen for the night so Chad could come and hang with me. Anyway, I won't bore you with all the details of my stay... I basically didn't sleep and did a lot of knitting. I was bummed because I had to pull out of a craft fair that I had set up for Saturday, but what can ya do. I ended up getting discharged on Sunday evening after my blood cultures came back negative. Yay for crazy doses of strong antibiotics I probably didn't need!
I woke up Monday morning feeling like complete crap again, with another fever and so many aches and pains from head to toe that I was convinced that I had a pulmonary embolism. Seriously though, I had every single symptom and freaked myself out. I had my dad come get me and take me back to the ER... and I was admitted again. This time I didn't have to go to the ICU since my BP was better. I had a repeat CT of my pelvis to check my lymph nodes (which had decreased in size and weren't as tender) and they did one of my chest to check for a PE (which I didn't have, thank goodness). My cultures were all still negative and they eventually got my fever under control. I was discharged on Tuesday. And after all that, no one can tell me exactly what happened. One doctor thought it was something viral (which is what I'm thinking also), another thought it was an adrenal crisis because my potassium levels were low (when in crisis they usually run high), and it obviously wasn't sepsis because everything bacterial came back negative. So yeah, that was fun... got pumped full of steroids and fluids and antibiotics, gained 10 lbs in 5 days and am sporting that awesome steroid moon face. Because of the hospital stays my appointment with the endocrinologist was moved up. That was a pretty straight forward appt since I already knew about the adrenal crap. The only thing I got was a script for a stress dose of SoluCortef. So basically, if I ever get the stomach bug, or get sick to the point where I can't hold down my steroid, I now have a vial of 100mg steroid and a needle so I can do an intramuscular injection into my thigh before I got to the ER. Awesome. Big needle too... big needle.
So, I'm sorry that this is turning out to be so long... but I'm coming up to today and that's where the new info is. On the CT scans I had in the hospital, there were apparently some other lymph nodes that were enlarged, so they decided to move up my PET scan (I wasn't supposed to have one until Jan or Feb) to this past Friday. I met with my NP at the cancer center and got my results today. So first off, there was absolutely nothing noted on the report about any activity in the anterior mediastinum, which is the area where the cancer always is. So, it looks like the Opdivo actually did finish clearing that up even after I stopped getting the infusions. Now for the downside... because it seems like with me there's always something else. There are now six (yes I said six) lymph nodes lighting up on my PET, as well as my spleen. There is also a spot on my right posterior upper iliac crest (hip bone) that is lighting up. That would explain the horrible pain I've been having over the last couple of weeks in my lower back and hip. So... big bummer, not the news I was hoping for by far. There is a small possibility that some of the nodes are lighting up because of the recent infection or whatever I was dealing with, but it's unlikely. Oh yeah, and apparently I also have a small hiatal hernia. That explains the upper abdominal cramping and pain I've been having for months. Anyway, the next step is another biopsy, of what will be up to the radiologist. Then I'm going to head down to the city to meet with a very well known and respected lymphoma specialist at Sloan Kettering and see what he recommends. So yeah, that's my update... was hoping for a good one since it's almost Christmas and what not, but what can ya do. It seems like every year I get my bad news regarding my cancer in Nov and Dec... so I think I'm just gonna start skipping those months, LOL. Anyway, positive thoughts, vibes and prayers appreciated. I'm just going to focus on having an amazing Christmas with my family, and I'll take all this other crap one day at a time. And of course I'll keep you all updated as I learn more. Have a wonderful holiday and happy new year!! XOXO
