Fine needle aspiration of a level 2 cervical lymph node to be exact.
Simple enough. It's a relatively small needle. I figured we would be in and out of the hospital quickly. He was sent to Interventional Radiology at our hospital, because his ENT wasn't equipped to do the procedure in-office. I like the idea of the hospital over 'in-office', anyway. Radiologists, with more training and experience, working in a more controlled area with more sterility seemed like the best plan.
I couldn't go back to the procedure area with him, though. As a nurse, waiting in a waiting room feels awkward, even offensive on some weird level. We're always behind the scenes with the VIP passes to the restricted areas and badges for all of the locked doors. Ugh. How rude.
But, also as a nurse, most of us have a different level of respect for office and hospital policies. Probably because we know the stringency of the rules in place, and abide by them everyday, ourselves.
I sat against a wall close to the locked door that led back to Interventional Radiology. I worked from my company laptop for almost an hour, I think. It didn't feel that long. I expected Josh to come through the door any minute. The procedure didn't require any anesthesia, so no 'recovery' time was really necessary. He was wearing khaki cargo shorts, so every person that came through that door would get a brief leg inspection from just above my laptop screen. But it was never him.
Then, an employee came through the door and stopped in front of me. A nurse. I was a tad confused and still had a good majority of my brain engulfed in work. I looked up at her, and her words were sort of jumbled. Partly because, like I said, I was still in work-mode, but partly because of what she said.
Anytime any medical professional starts out by saying "they're ok" or "they're fine" or "everything is ok" followed by a "but," lookout.
After hearing he was ok and then a "but," I immediately went into this defense mode. Like "but what the Hell did you do to him?!" I don't know why. I'm definitely not a mean person. I'm pretty compassionate. But I'm not going to lie, I was pretty pissed in that moment.
I could feel my face flushing as the slightly seasoned nurse sat beside me in a chair explaining what had happened in a thick, southern accent: Sometimes, during moments of high stress, people will have something called a vasovagal reaction. And he vasovagaled. Meaning, essentially, he passed out. But he's ok now. I know exactly what vasovagal syncope is. I also know how close the vagus nerve is in the area they were obtaining a biopsy on his neck, and how close the carotid artery was, as well. So, in my defensive-educated-wife-mode, I asked if the Radiologist had punctured through his lymph node. The nurse said yes, that they got the samples. Nope. Nope, not even close to what I'm asking here. I didn't care about the samples. I wanted to know if the Radiologist had caused my husband's vasovagal response with his needle, or if it was fear/pain-induced. My questions just warranted repetition from her, though. And something about hearing a nurse say "we see this a lot" does not ease my mind in a situation like this.
Defense mode may even be putting it lightly. I'll be honest, I was questioning her like a witness in a courtroom. My face was probably quite impressive, and definitely offensive. Like I said, this is not a norm for me. I like making friends and having small talk with other nurses. We're a cult out there; we know each others' hardships and stick together across all boards. But I just wasn't feeling it in that moment. I mean, my best friend, my partner in life, my everything had a reaction that I wasn't even aware could or did occur during such a 'simple' procedure.
The nurse finally brought me through the locked doors, and we walked down the hallway together to another large area full of curtained rooms. Several oncology patients were in there, but I didn't see them. I only saw my patient, my husband, sitting directly in front of me in a patient chair. He seemed to be miles away when I first laid eyes on him. When I got to him, the first thing that I asked was if he was ok. He immediately replied that he was, now.
I proceeded to ask him what had happened, while it was still fresh on his mind. He explained that the doctor first injected his neck with lidocaine to numb it. But he said the Radiologist didn't wait long enough for the medication to take effect before he began. However, the first biopsy went without incident or distress, according to Josh. The second one, though... not so much.
He said the doctor was having difficulty puncturing the lymph node and was chasing it around in his neck with the needle. Josh said he felt the needle scraping something in his neck, then a pop and sudden burning sensation in his right ear. He confessed that he feared the pop was a puncture to his carotid artery. I wished, in that moment, that I could have been there for his reassurance. He said the pain was intense.
Josh told me that he thought the Radiologist was getting chunks from his lymph node. Chunks?? As in a core biopsy?! That is NOT the procedure we were told would be performed. Even the educational paperwork that the hospital gave us just prior to his procedure was about FNA-fine needle aspiration. I mean, I'm not certain they performed a core biopsy, but that's what he was describing to me.
After the second sample was finally obtained and the needle was out, he said he was feeling pretty bad and still in pain. They decided to draw up more lidocaine to attempt to ease the discomfort level for round #3. This also gave him a needed break between punctures. But he was still getting worse, seconds (maybe barely minutes) after that second sampling. He said he had to referee the team before the lidocaine administration. He told them he was feeling light-headed and unwell. The next thing he remembered was his legs jerking uncontrollably, then people patting his leg and shoulder as he woke up.
He recalled several nurses standing around him and the Radiologist telling him he was ok. He heard someone say to another staff member that they thought he was having a seizure. He said one nurse had cold cloths on his head and face. Exactly how long was he out, I wondered. I told him we were definitely getting his records. I need to know what happened. Or, at least, what was documented.
After he was awake and alert, he said they continued with the procedure. The MD seriously made the choice to continue, even after his patient had JUST lost consciousness. More lidocaine was administered, and a third biopsy was obtained. He said the doctor took a smaller needle and repetitively poked in one area of his neck. From my previous research, it sounded like that was the FNA biopsy that the MD was finally obtaining.
He said the whole side of his face was numb, which we both figured was from the lidocaine. He also told me that, when he woke up, all that he wanted was me. My heart sank. So deeply. The thought of him being alone (per se) and nervous and wanting me was crippling. He's a tough, independent guy. So, the best way I can describe that feeling is like knowing your child was crying out for you when you weren't there to hold and comfort them. It was soul-crushing to hear him say that.
They had him stay for half of an hour to an hour extra after the biopsies, for observation. I watched his vitals closely. His BP was 138/91 (definitely elevated for him) and his pulse was ranging from 54-68. He isn't a runner or cardio fanatic, so that pulse was very concerning to me. I mentioned it in front of the nurse when I first encountered him; she responded that it was just compensation or a recovery phase. I was slightly distraught on the inside.
I'll be interested to see if/how well this episode was documented.
*** Update (7/31/16)
Josh's right jaw remains numb. His pain and swelling at the biopsy site continues, and bruising is now apparent. That pain, swelling, and bruising extends all the way to his right clavicle:
And the pathology report? Don't even get me started. The diagnosis was "skeletal muscle and fibroconnective tissue."
Are you kidding me?! The Radiologist didn't even get any lymphoid tissue! No wonder the poor guy had a vasovagal reaction! The damn doctor cut little chunks of his neck muscle out! WTF?! This has utterly blown my mind and upset me beyond belief. He still doesn't have a diagnosis and will need yet another biopsy, possibly an even more invasive one. I feel so helpless for him and ashamed of the medical community for letting my husband down like this.
And the documentation was definitely not a correct reflection of the events that occured:
I'm not sure where to go from here. I'm not sure what Josh feels like doing at this point. The follow-up appointment with the ENT that ordered the biopsy is 8/2/16. I guess we'll discuss more options then. In the meantime, I'm leaving it up to my husband to decide whether to file a complaint through the hospital or not. I did suggest that he not file one through the Board of Medicine, though. Everyone makes mistakes, and I'm not saying the guy's license deserves to be investigated or suspended. However, this was an extremely botched procedure that will still be billed to our health insurance and ourselves. Thus, filing a complaint through the hospital doesn't seem irrational to me at this point.
*** Update (8/2/16)
Shock and an apology was about all that Josh's ENT could offer. In his 14 years of practice, he says he's never seen this happen before. Josh's jaw is still numb, and his neck is still pretty swollen and sore from the trauma. His ENT wants him to wait 3 weeks to allow healing before discussing the next step.
*** Update (8/22/16)
I found a local, general surgeon that has extensive experience with breast cancer patients. I know this sounds hella weird, but hear me out first. He regularly performs mastectomies and lymph node biopsies and removals. My patients (that have been to him for various procedures) adore him, and I had a colleague directly recommend him, as well. I also looked up his Medicare billing reports to see what procedures he regularly performs. Cervical lymph node biopsies were included in that reporting. So, I called his office to double check that this was a procedure that he was still performing and if he was taking new patients. And since he was, Josh requested a referral from his ENT. Josh said his ENT was less than thrilled about this, though. The ENT informed Josh that if he went to the general surgeon that he (the ENT) would no longer be able to follow Josh. He wanted to send my husband to another hospital for the biopsy. Another hospital, with another Radiologist that Josh would, again, not meet or build a rapport with prior to this procedure. Neither Josh nor I were comfortable with that plan of care, which is why I opted to find someone that Josh could meet and speak with prior to having any further procedures.
I understand where his ENT is coming from: that a general surgeon typically deals with the abdomen and not the head and neck. Yeah, and look what happened when he saw an Interventional Radiologist that was supposed to be trained and skillful in this area.
This general surgeon has been in practice for 30+ years, and has been successfully managing breast cancer patients and associated metastasis in the lymphatic system with Oncologists. And while this differs from lymphoma, he's familiar with the lymphatic system. Besides, he isn't the one that will be reviewing the slides of biopsied cells. He's the specialist that will be guiding the needle into my husband's neck and obtaining a viable sample for the Pathologist. Skill, care, experience, and reputation are huge factors at this point. While Josh's ENT is a great guy, he has lost some considerable points in the referral area (and that's not really even his fault). If he wants to keep patients though, I would think he would be performing the biopsies himself.
The next appointment is next month with the general surgeon to discuss obtaining a biopsy from this troublesome, evasive, little lymph node.
My real fear is that my husband could have cancer that requires an invasive surgery, chemotherapy, and radiation. I just can't imagine seeing him go through all of that. The thought of explaining to our 3-year-old son why dad can't play because he's weak or has been vomiting is heart-breaking to me. Luke puts his daddy on a pedestal so high that I couldn't reach it with the tallest of ladders. And the thought of future follow-ups and a forever fear of the return of cancer after remission, just nauseates me. I deeply hope that it's just some benign process.
Right now, I'm just trying to support my husband and be there to listen to his fears and concerns. He doesn't need an optimist saying "Oh it's probably nothing. Don't worry about it." And he doesn't need a pessimist haunting his mind with what-ifs. He just needs someone concerned enough to ask how he is doing and feeling about the situation. I am trying to be that person, right in the middle, by preparing for the worst, hoping for the best, and just being there when he needs to talk about it all.
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