We definitely got a month worth of trials this January.! I’m over the moon (and a super blue blood moon it was!) to be able to make a fresh start this month.
Most of you know that on January 25th, due to a diagnosis of oral cancer, I had a neck dissection done. I ended up having approximately 45 lymph nodes removed from the left side of my neck, the same side the spot on my tongue was. Apparently the concern is that because the fluids drain into those nearby lymph nodes, the nodes could become malignant. The only way to find out if they are for sure is to remove them and have them biopsied. So, that was done and IT WAS NOT FUN. (I already wrote about that situation, so if you missed it and want to see how that went just take a look at my previous blog post.) Along with the discomfort of the drains and the swelling following the neck dissection there was another problem, my intolerance to strong pain meds.
Backtracking to Jan. 2nd, when I had my tongue biopsied, oxycodone left me curled up in bed in a pathetic ball at my parents’ house trying not to throw up. Every little twitch sent my head reeling. I was on a liquid diet at the time because of the pain and swelling. Having a chunk removed from your tongue will do that. Oxycodone did not help the situation. It was an ugly storm. At that point I realized what the problem was and stopped taking the oxy. After an afternoon on the couch in a zombie-like state my head finally started to clear.
Fast forward now to this neck dissection. Before surgery I told my doctors of my reaction to oxycodone, so after the surgery they gave me Dilaudid IV instead. I was still having some dizziness but when given a very low dose it seemed to work. I was released Thursday evening prescription for a low dose of oral Dilaudid. The following morning after getting out of bed, while Glenn was draining my drains (or milking as they call it – which somehow seems apropos for the dairy guy), I briefly passed out and then remained woozy all morning. No more Dilaudid for me! I would just have to get by with Tylenol and ibuprofen .
How I tolerated five days with those drains in, I don’t know. I briefly described them in my previous post. I can’t even think of them now without becoming almost irrationally squeamish and sick feeling. I was sooooo looking forward to their removal but also terrified. There were tubes under my skin! They ran across my throat UNDER MY SKIN and were going to be pulled out. Where they entered on the side of my neck, the skin was taut with swelling and sore from the weight of the tubes and their suction cups. I had also bumped them multiple times and even accidentally gave them a yank one night when I grabbed one of my pillows to move it. Can you say ouch? Yeah, I’m pretty sure I said something more vulgar than that. My appointment for their removal couldn’t come soon enough.
I won’t go into detail but the drain removal was not fun. There was some tugging going on and my legs wouldn’t stop shaking. Tears wanted to flow but I managed to keep them mostly behind my eyelids. The relief I had hoped for once those damn drains were gone did not come. There was no magic loss of swelling or discomfort. In fact, it felt the same. I still had a tight band across my neck, a lump in my throat, a raspy voice, and a very puffy neck and chin. The only bonus at that time was not having long cords dangling from my neck.
After taking me to get the drains removed, Glenn headed off to Japan on a work trip as we both expected me to be feeling good the next day. All afternoon after he left the pain was tolerable. I even got out for a little walk, taking Nala out for a slow 2 miles, enjoying the fresh air. I went to bed late that night propped upright on a stack of pillows as I had been every night since the surgery and awoke as usual to the harassment of our hungry pets. I felt lousy. I got up to feed them all and do the morning animal-related chores then took more ibuprofen and Tylenol and crawled back into bed where I remained for hours. I had a headache that wouldn’t go away. I felt sick to my stomach but made myself get up to eat a little. My neck was still puffy as heck. I couldn’t tell if it was worse or not but it seemed warm to the touch. I felt warm. I took my temperature. It was normal but I couldn’t come around to feeling any better.
I finally sent some pictures of the swelling to my doctor. Since I wasn’t feeling well he wanted to see me, but I was in Bend and he at OHSU. I inquired about seeing someone here in Bend but after messaging back and forth a bit I decided the better option was to head to Portland to see him since he had done the surgery on me.
I wanted to drive myself but when talking with Glenn about it he was worried I might get dizzy. Since I had been experiencing that lately, I agreed with him, and reached out to a couple of friends who had previously offered to drive me to up there at any time. I got in touch with Kelly and Renee, both were willing to drive me the 3 1/2 hours it would take to get there. Renee was stuck in the middle of an important test and couldn’t leave for a few hours and there was no way I could wait any longer, I’d already waited too long. I knew I’d arrive after the doctor had gone for the day and was hoping I’d somehow make enough of an improvement to get through the night. He said he would be in at 8a but I could come in through the ER if I needed to. Kelly said she would gather her things and head right over. Did I mention that I have some of the best friends a girl could have?
I contacted one of our pet sitters, packed a few random things, and in less than 30 minutes we were on our way. I generally love the drive over Santiam Pass but it was all I could do to keep it together, to not lose my cookies in my friend’s car. I had my eyes closed much of the way and couldn’t really look at anything without feeling worse.
My daughter, Chelsea, happened to be in Portland. She was staying at my mom and dad’s for a few days. They planned to meet us at the hospital when we arrived. I wanted Kelly to be able to dump me off and go. I really didn’t want her or my family sitting in the ER. The flu has been running rampant and has caused a lot of deaths this year, even in healthy people. I didn’t want any of them exposed to that, I didn’t want to be exposed to it. Kelly dropped me off at the ER door and went to park. The minute I stepped inside I put a face mask on.
I was triaged quickly around 6:30p, had blood drawn, vitals done, and was given ginger ale and crackers along with something else I can’t quite remember, an antiemetic maybe. Things are a tad foggy, I was in my own little hell. They couldn’t give me what pain meds I needed yet, I can’t remember the reason. I ended up having to wait a few more hours for that.
After triage, they sent me back out to the waiting room. Kelly came in and I convinced her to put a mask on too. My mom and daughter arrived. I said goodbye to Kelly and booted her out then asked my mom and daughter to wait in a waiting area upstairs in the hospital away from the ER. It was a nice space with a fireplace, less busy, more open, and not flooded with ER germs.
I suffered for what seemed like forever in the waiting area before I was taken to the back again. Now it was 8:30p. One of the docs from my surgical team came in to see me. He took a good look at my sutured neck and the swelling there. He didn’t feel it was infected but suggested I get admitted for pain control, IV hydration, and monitoring saying they could easily take me in for a CT scan if infection or a hematoma was suspected. I was told my doctor would be in to see me the following day, in the meanwhile they’d find me a bed and get me admitted. I sat back there for another hour, still without pain meds, and at 9:40p was finally moved to an ER observation room for a temporary stay until they could get me another room.
The temp room wasn’t bad at all. It was private with sliding glass doors that muted the noise. There were even curtains to keep it private. My mom and daughter came to see me there and brought my things so I was able to grab some stuff I wanted to have with me. I finally got some pain meds and began to feel better.
I spent the night in the temp room and early the next morning two doctors from the surgical team came by, one was the same one I’d seen the night before. They were satisfied with the way my neck looked and did not suspect infection.
My doctor came by around 4p. He still had not received the biopsy results. He also thought my neck looked good. Yes, it was swollen but it was also soft. He wanted to keep me one more night for pain management and try me on Tramadol, an opioid alternative. I was hopeful but it didn’t do a thing for me.
Around 5p I was moved to the “real” room. It was on the acute care floor. When I got there the other bed was empty. I had a great view from my room but it was tough to turn my head long enough to get a good look.
Chelsea and my parents came in and we had a nice little visit in my “private room.” Chelsea stayed after my folks left and we watched a movie until she had to leave. At 9:30p I had a fabulous message from my doctor saying that the biopsies were all negative. There were no malignancies and no radiation treatment would be needed. I called Glenn and my folks and sent off a bunch of texts that led to a barrage of messages lighting up my phone.
Around 11:30p or so there was a flurry of activity in my room. Bodies hurried in and out and a roommate showed up. I couldn’t see her, I only heard soft voices, nurses in the hallway talking. Someone whispered “cancer patient.” Oh god, I am now a cancer patient, I realized. I hadn’t quite thought of myself that way. Come to find out, they were likely talking about my roomie. With a curtain between us, I didn’t see her until early in the morning when she had to pass by the foot of my bed on the way to the restroom. Later on she called out to me from her side of the curtain, apologizing for the late arrival and commotion. Like me, she had come in through the ER. Unlike me, she had breast cancer that had metastasized to her bones and liver. I was sad for her and it hurt a little to share with her my good news. Later on I heard the doctors talking with her. She had cancer in her spine and discs were compressed. Luckily they weren’t effecting her spinal cord but I understood that she was in a lot of pain and would have a rough road ahead.
I spent a little extra time that morning saying thank you for the good news I had received, saying prayers for this woman, prayers for my friend Linda who is dealing with multiple myeloma, prayers for my friend Patti whose breast cancer has returned after 9 years.
Around 9:30a, after the oral Dilaudid and antiemetic combo proved effective, I was discharged. I went home to my mom and dad’s and got to be spoiled by them for a few days.
It is now Monday, Feb. 5th. This coming Wednesday I will be 3 weeks post-surgery. Although a swath of my tongue still has a slight loss of sensation following the biopsy there, I can eat without any issues. I have a lovely line etched across my neck that feels a bit like a choker with two holes on the side that look like bite marks, so I’m told. My neck and chin are still swollen and the underside of my chin is still almost completely numb. The bottom left corner of my mouth doesn’t fully want to function.It makes my smile somewhat crooked, more so than before. But the good news is it still works!