What the Hell happened this week? (part two)

I was transported to the magical city known as Cleveland Clinic Main Campus in an ambulance, driven by two boys whose collective ages might've allowed them to consume an alcoholic beverage. Pretty sure. Since I was facing out the back of the vehicle and couldn't see behind me, it is entirely possible that one was steering and the other was working the pedals. It was 1 AM and at that point, I really had no idea what was going on around me.

 

They wheeled me into the building and up to my room, which I shared with "television on all night" guy. I shall call him "TV", for short. I was greeted by the sunny faces of Cecelia and Toya, who got me checked in for the first of who knew how many days. I unpacked my trusty hospital companion, "raggedy ol' rabbit thing", which was packed, along with fresh underpants, by Lou when we found out I was going on vacation. I managed to get some sleep by making a sandwich with my head between two pillows, thus squelching out the sound of the occasional yelling and explosions emanating from TV's television.

I was awakened in the morning by Allyse, my nurse for the day. She was equally as sunny as the nurses from earlier in the morning when I arrived and she gave me a little rundown on what to expect. She also introduced me to Tenisha, my PCNA. They were still awaiting the results of my blood cultures and would be giving me a steady dose of an antibiotic called Zosyn to prevent me from contracting any infections.

A little later in the morning, they moved TV out of the room because of my immune system issues. I felt rather awful about it because it was his room first and I thought that if anyone should go, it should be me. Not long after TV's departure, in walked Dr. A and a fellow named Dr. D. Dr. A is a colleague of my oncologist, Dr. V. We discussed my case and what future steps we would take to make sure this sort of thing was less likely to happen again. Dr. A told me that he suspected the one-two punch of radiation and chemo likely knocked my immune system down to zero. It wasn't because of the radiation, but rather the location of where the radiation was being beamed that made all the difference.

For those of you who've read earlier blog posts on bone marrow biopsies or have firsthand knowledge of them, please bear with me. For those who do not know, bone marrow biopsies are performed using the marrow in the hip bone. This area is marrow rich and it produces all of the neutrophils (a type of white blood cell that fights infections) that keep us safe. Since my tumours are located in my lower spine and hip bone, they are targeting that location to kill the bits that shouldn't be there. The trade-off is that it's also killing off the marrow production or at least slowing it down. Since chemo and its support meds also do the same thing, you can easily see how we ended up in this fine, fine mess.

I like Dr. A and his ability to explain all of this so simply. He added that he felt there was an overabundance of Dexamethasone going into my body. Between the 40 mg I was taking orally on Fridays and the amount being given as a pre-infusion medication before my Daratumumab infusion on the same day (and probably the Benadryl), he believed that my high from the steroid and the antihistamine was too high and that I was crashing to the lowest low possible. Dr. V agreed that this was likely, felt that I had been on the Dex long enough as it was, and removed it in full from my weekly "diet".

The next 24 hours were spent with the comings and goings of all manner of hospital staff; the return of Cecelia from the night before on Tuesday evening and the return of Allyse on Wednesday. I enjoyed conversations with all of the people who stopped by--the young ladies cleaning the rooms, the folks bringing in my meals, and others who performed other necessary peripheral duties. It was a pleasure getting to hear their stories and to invite them to share a little bit of their lives with me. In return, I made sure to let them know how much I appreciated their work and that it would be wrong for a person to not notice how important their jobs were to folks like me. All of them are wonderful and managed to turn what could've been a very routine and unwelcome hospital visit into something quite special. 

Dr. A and Dr. D stopped by again late Wednesday morning and gave me my action plan. Dr. A gave me the thumbs up for a discharge by mid-afternoon. We talked about the books I was reading and he took down the name of one of them. I hope he enjoys it as much as I have been enjoying it. 

By 3 PM on Wednesday, I was released back into the wild. I took walk down to the nurses' station to say goodbye and to thank them again for all their care and kindness before heading downstairs to be collected by Lou.

So right now, I'm typing this from the chemo chair. This morning was my last radiation session and I'm embarking on my first Dexamethasone- and Benadryl-free chemo infusion. I would be lying if I said I wasn't a little bit nervous about embarking on this new path. How will I respond overnight? How will I feel tomorrow? I guess I won't know until I get there.

For now, that's a story for another day.

The takeaways from this are: 

• Everyone on the hospital team is an integral part of your care, so please don't forget to thank them. 
• Listen to your doctors because they know better than you what needs to happen. Just don't forget to tell them what's going on so they get the full picture. You are a part of your care team.
• I giggled when I got tested for COVID-19. I like it weird.