Chaos and exhaustion in the transition

On Monday 9/14/20, I had my first appointment with Dr. Stein and an infusion. The appointment was set for 10am, so I was pleased that I could have a slightly slower start to the day. I thought it was a good omen for my new team. In some ways, I was right--and in many ways I was very wrong. 

For the first time in over six months there was traffic, so I was running a tiny bit late, which is fine because I am always early; however, this does not work so well when the elevators are broken and there is literally a line out of the door of the hospital. Also, there are 14 floors. I have an appointments on the 11th and 14th floors. [HEAVY SIGH]

After waiting enough minutes to know that I would be waiting many more minutes for the elevator, I went ahead climbed to the 11th floor because that is where my doctor and his team are. Well, I discovered that is where they were. My team WAS there; my new team is on the 9th floor-- of course the way I found that out was by talking to the meanest lady ever. 

The woman who has checked me in for the last 14 months acted (as she always does) like she had never heard my name before and said "what doctor?" 

"Stein," I replied.

 "We don't have no Stein here." 

Oh god. Am I in some kind of twilight zone?

"I used to be Drake's patient, and now I am seeing Stein. Is LaToya here?" Latoya is the scheduler and handles everything. LaToya also knows me. She is the person who saves me time, frustration and helps me out all the time. She knows how to get things done and does so kindly, and patiently. I love LaToya. I chose this hospital because of LaToya and Tiye-- this is the team I love. 

While I am beginning to freak out, the mean lady asked me for my phone number. I spouted out the digits as I walked toward LaToya's desk, and the mean lady finally said "LaToya isn't here." 

I started to cry. I pull up my phone and see that it says 9th floor.  I turned to walk down the fire escape stairwell to the 9th floor. 

I didn't know I was switching to the 9th floor. No one told me that I was not just switching doctors, but whole teams--and whole floors-- and going from a quiet old man floor, to the place where they scream my name across the room because their systems won't talk to one another. 

I am devastated. The 9th floor is not Zen. The 9th floor is the OCIU. It is where the sick people are. Cancer patients come here instead of the ER or Urgent care. The sick people are usually the older people accompanied by a care-giver who loudly watch videos on their phone. They are coughing with no masks because they are too out-of-it to know how to wear a mask.

This is a super-busy floor because it is also where they do bloodwork/testing.  Someone just announced she is there for a COVID TEST. This made me bust into tears and madly text Kelly that I can't do this anymore. I can't be around people who need covid tests. I can't be around the people who scream to each other. I just can't. 

At this point,  it was 40 minutes past my appointment time. Tiye did warn me that it might be a long day. 

The lady who wants a covid test asked about it again. She returned to the waiting area and sat in a seat that says: "Help us keep you safe. Please do not sit here." No one stopped her. No one is watching in the wild west of the OCIU floor 9. 

Someone sneezed loudly. I am too scared to look up and check if they were wearing a mask or not. 

Finally, 57 minutes after my scheduled appointment, I was shuffled into an exam room. A nurse perfunctorily took my vitals.

A man walked in who looks like a resident-- maybe a fellow? and said "Melissa?" 

"Nope. Amanda." 

 "What is your last name?" 

"LeTard" 

"Hmmm i think I am in the wrong room."

 "Probably."

Go find Melissa, you delightfully incompetent postdoc. The 9th floor is truly astounding. 

The post-doc came back after a while and said that he was in the right place. He was going to ask some questions, after he gets the computer working. 

"That's fine. Is Tiye coming?" I asked, hoping that she will come as she promised she would, and then I won't have to go through my entire history twice.

"I'm sorry I don't know who that is. This is only my second day on this rotation." I begin to cry. I can't help it. He is going to not remember a damn thing I say after he spits it back to his attending. He will never see me again after today. I was hoping that Tiye would be here by now, or that my my new NP Alicia would be here so that I would get to know her. Neither were there. Instead, it is a random, very sweet but clueless post-doc instead.  

Then Tiye opens the door and I burst into tears

"I am so happy you are here. I can't do this." I tell her about the elevators not working, and the mean lady upstairs, and the covid person--and that the 9th floor is so much more unpleasant. 

"We don't test for covid here" she says.

"Well there is a lady who is sitting in a seat that says not to sit there wanting a covid test."

The next hour or so is a blur: I try to tell Tiye and the post-doc about the eleventybillion appointments that have happened in the last few days: the neurosurgeon call, the neuro-oncology appointment, the tumor board presentation, the plan for an EMG test, the plan to switch my pain management around, and that I am beginning PT tomorrow, and my weight loss, and... and... and...and the start of school has been insanely hard.

Then, Dr. Stein arrived. I tried to tell him about these things too, with Tiye's help; and then at some point his NP Alicia pops in. The Post Doc is manning the computer and wants to change my medication that is managed by Dr. Lowe, which I am trying to tell him as he is consulting on the dosage. Meanwhile, I notice some other nurse has entered.

It feels very chaotic. 

Tiye helps answer questions for me.

I am trying to look at my laptop that I had brought with me to be organized. It has an agenda and questions on there, but it is not an easy thing to do when people are staring at me and they are quick to move to the next topic. My opportunity to pop in with whatever I have to ask is missed. 

Dr. Stein does an exam to see what my legs can do. In a lot of ways, I am ok. I can climb 11 flights of stairs. I just can't cross my legs at all, or put on my pants like a healthy person.

Dr. Stein is done. He has to go see other patients. People begin to leave, and as people are leaving, I manage to ask Alicia for her email. She said she would give it to me and she would give me her personal cell number as well, she will write it on a card for me. I thank her. I joke to Tiye that she never gave me her cell. 

I finally get upstairs for the infusion around 12:30. I sit and wait for my name to be called. I am so emotionally drained. I check my email and do the easiest tasks, like delete and archive emails that don't matter to me. I realize that I forgot to get Alicia's card. Shit. I email Tiye--just like always. When I need anything, I email Tiye. It is hard to imagine doing it differently.

I am exhausted and hungry. At 1pm I am called in. When I sit in the infusion chair, they give me a bottle of water.  I ask for some food. I am grateful to know now that they have food. With experience comes some advantages. They give me a peanut butter and jelly, and then start my IV.

Alicia, bless her, comes to the infusion room with her card. It has her personal cell phone number on it. I promise to call 911 and not to call her if I have chest pains. 

I am home at 3:30. I have therapy at 4pm. It is both good and bad timing. I am happy to unload this day on someone, but I desperately need a nap.