Chapter 7: Unstable

 

Unstable:

Things were quiet initially following surgery and discharge. I felt like the surgery had given me a new lease on life. Like now I was safe for some time and could have some fun without worrying. My brother was still here, along with friends from college, Spencer, Kyle, and Micah. They would keep an eye on me. I was still driving us around. I was happy that despite everything the neuro deficits did not take away core components of my independence. We end up at an outdoor mall. I get some coffee. It wakes me up, feling a bit back to normal. Now what? I suggest we go to the Gilgal, a free sculpture park where there exists a giant sphinx with Joseph Smith’s face on it. I had been many times before. It was trully comical, and what is usually better are the pious persons surrounding the statue, as though it were something to be renowned. We had a chuckle. It was very hot outside. I was wearing a sweater and sweats for comfort. After a little while I started to feel a little light headed. I needed water. At least I though I needed water. I don’t tell anyone that I feel off yet. I don’t want them to worry. The last thing I want to do is be a burden to these people who have traveled so far and made so much time just to see me.

              We get to the car, I chug water. At the time I don’t know. The water is poison. I start to feel nauseous. I take an anti-nausea pill. I open my mychart app and try to arrange for an urgent-care visit and the cancer hospital. None available. I get a call back from my neurooncologist. They suggest that if things get wose I go to the emergency department. I tell my friends that I feel nauseous. We agree to start heading home. My brother believes that I’m hot from my layers and dehydrated. It’s a good guess. I am more worried.

Something had been happening in the back of my mind that made me exceedingly anxious. Ever since leaving the hospital I had been yawning excessively. At first I and everyone else thought it was just being tired from the whole ordeal. Nothing seemed to abate the yawns. There weren’t other symptoms. I knew about the neuro-yawn. When people had massive strokes they often developed intractable yawing. People with major brain trauma and pathology might also pathologically yawn. What worried me most was brain-stem pathology—one of the most common causes. Despite the surgery, was there a bunch of new growth and swelling that was pushing at my brainstem causing a pathologic neuro-yawn? Did this mean I really wasn’t safe? Was I on another slice of borrowed time? My friends knew I was worried about the yawning. I hadn’t told any of my care team yet. I figured that it must be a response to my brain trying to repair the surgical damage. I mean, I didn’t have any other symptoms. And I just had surgery. There was no way that there was something knew going on, especially when I had just been released from the knife!

I get behind the wheel with my friends and brother at my side. They ask if I’m ok to get back. I say yes. I start driving. It gives me confidence that I can do something. However, after a few turns, my hands get tingly, I feel more nauseous and light headed. I pull over. Something is wrong. Very wrong. I ask if someone can drive. I say that we need to go to the hospital. Friends are worried. We switch out. I take off my jacket. I drink some more watter—probably a bad idea. It doesn’t help. I sit in the passanger seat and direct us to the emergency department. I start hyperventilating. I’m worried about brain swelling, and I knew hyperventilating can be a temporizing treatment. They drop me off at the ED entrance. I instruct where they can park.

I walk in. There’s a couple people here already. No one looks terribly acute. I go up to the front desk and give them the shortest story about why I need to be seen emergently. “I’m a recurrent glioblastoma patient who just had neurosurgery with Dr. sarah menacho about one week ago and was discharged a few days ago due to massive cerebral edema. Today I all-of-a-sudden began to feel nauseous and light-headed with tingling in my upper extremities. I don’t have any other neuro deficits. I was not discharged on steroids. I’m very worried that I’m developing significant new cerebral edema and I think I need an MRI as soon as possible. The front desk woman seems to jot all this information down. Then she invites me to sit in a waiting chair and tells me they will call me back when they’re ready. They state that the ED is very busy so it might be a while.

My friends and brother have parked and they walk into the ED to join me. I update them on what’s going on, and that I’m checked in, and now we’ll just have to wait. The waiting makes them uncomfortable. I’m really glad they’re here. I’m scared. I thought I was just given a safety blanket just a few days ago. What was happening?

They try to call someone back into the ED who appears to be attempting to flee. They never get him. When will I be up? I think. I want to expedite the process. 4 minutes later, I go back to the front desk. I tell her that I am feeling worse than when I initially came in, and that I thought something trully emergent was going on. I let her know that I was a physician as well. As though that might help. She told me they didn’t have any open beds and were short staffed because of the latest wave of covid, but that I would go back as soon as something was ready. She asks me while I’m there if there’s any reason I couldn’t have an MRI. No I’ve had several I told her. I sign the consent. It feels like progress.

I go back to my friends and tell them I’m not going back yet. I continue to hyperventilate. It’s something I learned. It’s something that might help? Knowledge is the only weapon I have. They try to call the guy that’s fleeing again. No dice. Finally I go back to the front desk again. “Hey, I’m starting to feel much much worse.” I tell the front desk lady. “I’m really worried that I have a lot swelling and might be close to brain-stem herniation given my history.” This seems to catch her attention. Finally a few minutes later they call for me. Can my friends come back? No, we have a strict visitor policy. They allow one to come back with me, the others will be back later. They may need to rotate.

I’m placed on an ED bed. A nurse comes in with a gown and asks me to change. She draws labs. She tells me I’m going to the MRI. I’m wheeled to the MRI. I’m so glad something is happening and that we’ll get to see what’s going on. After the MRI, a neurology resident tells me I’m going to be admitted to the neurology ICU. He says that there was cerebral edema, and that my sodium level was dangerously low. They need to urgently increase my sodium. The low sodium is likely what is causing the brain swelling. I understand. They inject some steroids in my veins as a temprozing measure to combat the swelling. I text everyone which room I’m going to. They ask if I need anything from home. I’m wheeled upstairs. The ICU nurse introduces herself. The ICU resident introduces himself. Later Dr. Menacho comes by to see me. I’m grateful. She has the knowledge and skill to explain and rectify this situation. I’m given some peripheral IVs. They start running hypertonic saline (concentrated salt water) into my veins. What I didn’t know before was that the water in the heat I was drinking earlier was only lowering my sodium more and worsening the problem. I’m put on a schedule of steroids as well. This is both for the swelling, and to try and treat some of the underlying cause. Dr. Menacho explains that she believes this is all something called syndrome of inappropriate anti-diuretic hormone. You’re brain normally makes a hormone that tells the kidneys to absorb much more water, usually in response to the brain thinking there’s too much salt concentration in the body; However, in my case, this was happening inappropriately. It was not uncommon with brain pathology. It happens with strokes, head trauma, anti-psychotic medications (probably the most common we would see in the hospital). After my surgery there had still been some residual tumor on the right temporal lobe. Dr. Menacho seemed to think that this bit of tumor may have gotten a little angry and inflamed. And in its inflamed state it caused this syndrome of inappropriate anti-diuretic hormone, causing my sodium levels to drop dangerously low. This seemed like a likely explanation. I was relieved to hear it wasn’t some sort of new tumor growth causing everything.

So there I was. jUst out days ago, now relegated to the hospital for several more days. I was devastated. The whole reason I chose to stay in salt lake was to maintain some level of independence and have some options open and maybe even ski later that winter. And now, would my body be so unstable that I would be a danger to myself even if I got out of the hospital? What was the point of staying in that case?

My friends and brother come up. They’ve brought my pillow and sleep mask from home. I’m incredibly grateful. I’ve come to know that home comforts are paramount in the hospital. They also bring up settlers of Catan so we have something to do. They also bring me up a coffee. As a I start to drink the coffee, the nurse comes by and tells me that I’m on a free-water restricition due to my sodium and that I’m not allowed any free fluids. I order some sort of startchy, parching hospital dinner. They give me a little Gatorade with it. I can barely eat it. I’m so thirsty. With the help of my friends, we let the other residents know where I am. More guests come. The nurse isn’t terribly happy. We set up the tray to play a game of Catan. It’s a fun break from everything. Partway through the nurse comes by and states that people need to go soon because of the visitor limit. I beg her to give us a few more minutes and she obliges. She asks me if I want any of my medicines. I’m getting more steroids. They’re going to do another blood draw for sodium. Am I in pain? Do I want anything for pain? I’m not in pain. I ask for the oxycodone, however, that I know is available, under the guise of pain. I ask for it because I know that it will help me feel more relaxed. It’s centrally acting. Maybe I don’t need it for physical pain, but for the inner turmoil, I know that it will help a little bit. Maybe if I could calm down a bit I could be more present with everyone.

We finish our game of catan. They come by for my breakfast order. I won’t be allowed coffee. Several people leave back to my apartment. Spencer and Zach stay. We put on a movie to pass more of the time. They tell me that they will allow one person to sleep in the room with me. Another friend texts and asks if she can come by. It’s Cori. I tell her to come after 8 when they don’t turn away visitors. She joins us for a movie. I’m glad she’s been able to make it. She is moving soon which adds elements of finality that I’m not ready to accept. As we watch the movie, I hope someone joins me on my hospital bed. I feel so alone and scared. I want physical closeness. Validation through touch, to say “your body matters, and therefore you matter.” It doesn’t really happen, but that’s OK.

Meanwhile during the movie, I notice that my brother is sniffling and coughing. I know that I’m about to get an immunotherapy in a few days. I cannot afford to get sick. These symptoms make me incredibly nervous. I ask him if he would go and get a COVID test to be sure. It’s time for the evening. We finish some of the movie I assume. Cori will drive zach back to my apartment. The others have already left. I thank him for agreeing to get a covid test. They leave. Spencer and I finish off one more movie as we attempt to dose off.

The nurse comes in once more before bed. She gives me another steroid dose. They check my sodium again. She asks me if I need any of my other medications. I get the lorazepam I had been prescribed as an outpatient. I want something to just knock me out at this point. I take an additional oxycodone at the same time. I know it’s a dangerous combo. I don’t care anymore. I ask for melatonin as well. I check my sodium on my phone before trying to sleep. It’s gone up from 123 to 127. That’s progress.

I am covered in monitors and I wonder allowed to the nurse if I need to have them all. Are there any we can remove? For instance. Why am I on telemetry—cardiac monitoring? There is nothing wrong with my heart, and there is nothing in the disease state or treatment that would change that. Telemetry is often used to catch arrhythmias that can be fatal. So it does have a role. But it seems like a waste of wires and money for me, as far as I can see. And the blood pressure cuff. Why did I need that at night? It was around my fluids IV, and so it caused swelling and pain every time it inflated. And then of course, the oxygen saturation monitor. Again, something that was only attached to me because I was in an ICU, but would certainly not change care in any sense. Robbed from my job, the patient role was the last place I could be a doctor. I was going to be critical no matter what.

The next morning I got a breakfast sandwich. Zach and friends returned. Spencer was still there. They asked if they could get me a coffee. The nurse agreed that I could have a “starbuck refresher” drink because of its high solute load. The breakfast andwich was dry, but I ate it out of principle. The nurse allowed them to get the caffeinated drink. My sodium had climbed to about 130. I was making progress. Soon they could stop the fluids. I was given steroids and a heartburn medication and another sodium check. I had Ritalin prescribed as an outpatient for cancer fatigue, and they gave me that, for which I was grateful given the lack of caffeine I could receive. Every day I ask for water, I ask for coffee, and I ask if I could leave. As far as I could see, I no longer needed to be in the ICU. I could be managed with salt, fluid restriction, and outpatient monitoring. I wanted more than anything to leave the hospital.

Dr. Mendez, my neurooncologist comes by and talks about everything that’s happened. He agrees that prognostically the fact that this happened is not a good sign. But perhaps treatment will help a bit in the long run. I ask him when I can leave. They want to see my sodium get to 135 and be stable there before they will let me leave. I agree to this. I joke that I could just go up to the computer and put in discharge orders because of my physician status. The joke lands fairly well. There’s nothing so absurd that humor cannot assuage. He tells me that because I’m stable from an ICU standpoint that they will try to move me down to the normal floor at some point. Later the nurse tells me that I will be boarding in the ICU, which basically means staying there but not receiving ICU level care. I hope that means I can remove several of these monitors.

              Later that day my sodium is 133. They stop the hypertonic saline. I’m glad, one step closer to leaving. I ask my friends if they can bring my xbox next time they come up. We ask the nurse if we can bring some additional coffee. She initially says no. But if we do a shot with salted caramel so that it’s got enough solutes, then the answer is yes. They go buy it for me. I’m so happy to drink real coffee again. It brightens my day. Zach tells me his COVId test was negative. I’m relieved. I agree that I think it’s mostly allergies from the smokey air. However I’m still worried that he has a brewing illness. More friends and residents visit. We set up the xbox to play some jack-box games on the TV. It’s fun. It’s easy for everyone to participate. I feel so fortunate to be able to have fun in the hospital with my friends. So few people, especially during the COVID pandemic, are unable to do that. The nurse tells me I’m registered for a bed and that I might move floors later that day. She checks my sodium. Always the same poke in the hilt of the left wrist. It’s quite painful. She offers me oxycodone and Ritalin. I take both. I want to feel relaxed and energized. I mean, after all, I have cancer, don’t I deserve the good drugs now?

We play a few games. It’s fun. I order a dinner, some sort of steak. But friends are going to Taco bell. They bring me some. It’s the most delicious thing I’ve had all hospital stay. Dinner comes after. It looks decent. I pick at it a little, then offer it to Spencer and Zach who have a little. They say that it do’sn't taste bad.

It’s time to get ready for the evening, for people to start leaving. Spencer is going to stay one more night with me. Zach will go home again because I’m still nervous about potential illness. It’s very kind of him and I’m grateful. Spencer puts on another movie. One we’ve both seen a billion times that we know is fantastic. The nurse comes by with my sleeping drugs and everything. My last sodium was 135. We text zach. He asks doesn’t that mean I get to go? The nurse mentions that I may get a bed overnight and if I would be upset to move in the middle of the night. I tell her that if possible I would like to avoid moving in the middle of the night, seeing how many electronics and gadgets we had set up in the room for entertainment that would need to be moved. She agrees, and states there are others that may be able to move first. But that if the neuro ICU gets really busy all of a sudden that I will have to move. I understand. I moved a patient in the middle of the night before. It was jarring for them, and it’s hard on the nurses as well.

I start to doze off a bit. While I’m happy to have someone in the room with me, I wish a little bit that I were alone so that I could call some of my other friends and talk about how I was feeling. Something I’ve certainly learned is that different people allow you to share and offer different pieces of your self. One person can’t do it all. I wanted a chance to reach out to those other pieces. Maybe I do it that evening? I don’t entirely recall. I told someone that I was scared.

The next day zach and spencer bring me the salted caramel espresso again. I get my breakfast sandwich. It’s dry as usual. I want water, but they give me Gatorade. My sodium is 136 now. I ask the nurse if that means I can discharge? She reaches out to the resident team. Menacho talks to Mendez. They agree that I can discharge if I come back in for lab checks the following morning. I am very excited. I start to pack up all of my things. I tell everyone else that I’m about to get out that day.

During this time Spencer and Zach had been attempting to create a vistation and event callender for me for the following weeks to help me keep track. It was a very kind thing to do. Dr. Mendez tells me I’ll have an appointment the next day to discuss treatment, and that we would hopefully get radiation started very quickly.

Cori tells us that she is going to an octoberfest event with some friends at snowbird later that day and invites us to come along. I don’t know if it’s a good idea, but I think we should go. I’ll do anything that feels knew or different. I’m finally discharged from the hospital with steroids that I’m instructed to take twice a day. I have an appointment and labs and an immunotherapy infusion scheduled for the following day.

We get to the Octoberfest event. I’m incredibly nervous. I worry that I’m going to drink some form of free fluid without enough salt and push myself right back into SIADH and require repeat hospitalization. But I want freedom, and some independence, and to live like a normal person, so we go. It’s a relatively lively event with plenty of live music. The smoke is thick and ruins the beauty of the mountains. We go to a tent to get steins and fill them with beer. I bought a half-liter, I have several other steins at home so I wanted something smaller to take home. Then we walk over to a food tent. I want something salty as an assurance. I am trying to be safe. My friends are a little nervous for me. I look a little unsteady, mostly because of my visual deficit. They urge me to tell them if anything ever feels wrong or different. In the food tent I buy schnitzel with many pickles and sourcrout. Very salty. It’s incredibly delicious. On the stage a lively German band plays and tries to encourage audience participation. It’s fun. I’m so glad that we got out and to no longer be in the hospital.  We finish eating. Cori offers me a salty pretzel. I get another light beer. We sit in the shady grass and observe the festival for a while before deciding to leave. Spencer and I are dropped off at my apartment. Zach had left that day seeing that I was stable and getting discharged, although he was kind enough to offer to delay leaving just in case.

Once in the apartment I decide that it would be a good idea to find sodium pills. Spencer tries to help. We call some stores, he walks over, but they don’t know what we’re talking about. Eventually he buys a hydration mix for water that has a significant amount of salt in it. Then I order straight sodium pills from amazon as a crutch. I’m very grateful for spencer having picked up the hydration packets. I make some water with one. It’s salty. I feel safe drinking it. The sodium pills will come tomorrow. Until then, I also have beef jerky that I eat for mitigation.

Emotionally I feel dreadful. I feel that I can no longer trust my own body. I feel that my freedom and independence has been stollen. On top of that, I feel that I might as well be knocking on death’s door. If something like this could happen so rapidly just from drinking water, who’s to say it wouldn’t happen again and then be more serious? All that needed to happen was some low sodium, some swelling, some brainstem movement, and those were the cards. Was I looking at weeks of life? More than ever before I felt as though my entire future had been stolen from me. What was the point of planning anything for the future at this point if my body was going to be so unstable? Could I really afford going anywhere safely? Would that be fair to friends and family, to rely on them to take care of any emergencies should something happen? This timing was bad, I figured it meant I would never ski again. That was devastating. I figured this closed the door to going back to residency. Of course if I was a liability with sodium and could drop at any time, I obviously couldn’t be working, even with oversight. That was devastating. Sequentially, it felt as though everything that had made up me was being taken away, even though I had made that initial decision to stay in salt lake precisely to avoid that.

Your body is your connection with the rest of the world. Whether that be through physical interaction, or sensations, or communication. It’s all a relationship that you build over years with the world and others within it. Part of that is future and vision. What world are you trying to create? I felt that connection had been entirely severed. It was incredibly isolating. I was scared, and lonely. I wanted more than anything for someone from my past who I had barely kept in contact with to reach out and tell me they care and they miss me, maybe some long lost unrequited love would be confessed. To say, despite this severing, you still matter. I began craving physical contact. Something to tell me that I was present. Something to tell me that maybe for just a little while, I could be safe. I felt severed from my past as well. Like everything I had done to make me, and the memories I made, I could no longer access them in the same way because of how different my current situation was. It was a profound feeling of loss, for which I don’t believe there is an antidote. And in this distressed state I began to realize more unfulfilled dreams like nightmares against my subconscious. I know that I’ve talked about it before. I had a dream that one day I would meet some woman of my dreams who is smart and articulate and beautiful and caring. We would hit it off and develop that kind of love you only seem to see in movies. Eventually get married after a long discussion about what the institution of marriage meant, with big plans to make the world a better place than we found it, with equity for all, ending sexism and racism, and fight against global warming. And of course we would have a beautiful house with a garden and many dogs. And one day I thought that I would have kids. It’s a lot to give up. This whole last event in the hospital with my newfound instability put the final nail in the coffin on those dreams. Plus my previous chemo treatment likely left me sterile, and insurance would not pay for sperm storage, so that was always a bit of a nonstarter. But there’s a chance there’s something genetically wrong with me that was a nidus for all of this cancer. That’s certainly not something I would want to give to someone else. If you knew that creating a person would cause them immense and immeasurable suffering, would you still do it? I don’t know anymore. I think that I would, because I have to believe that what I’m doing and what I’ve done and what I will do is valuable and meaningful.