A (Hospital) Room With A View…

TL;DR: I spent this week in the hospital recovering from sever neutropenia/neutropenic fever. All is ok now! My room did have a lovely view of PV. I’m very glad to be home and that it all went so well. I am on track for my next treatment next Friday. Thank you all for being part of my excellent support system! I hope all of you have a wonderful Labor Day weekend.

As you might guess from the post title, this week wasn’t quite what was expected. As the title suggests, I was in the hospital. Last Friday night I got a fever unexpectedly and on the advice of the doctor on call (who happened to be my doctor), headed to the ER. After a long wait I was admitted with severe neutropenia/neutropenic fever.

What this means is that my immune system was basically not existent. (My bloodwork showed literally 0 for neutrophils; and did this over multiple days.) While I was in the hospital I had many tests trying to ascertain if I have/had an infection. I also got IV antibiotics every 8 hours until my neutrophils were up into the “mild neutropenia” range.

I also got a series of 4 injections to stimulate my bone marrow into producing white blood cells (including those neutrophils) and ultimately those injections are what enabled me to heal and come home.

Ultimately no infection was identified and the doctors told me this is common in cases like mine. The fever is caused by either something going on at the cellular/tissue level that the tests can’t see, my body could be sensing a small infection in my GI tract somewhere, or my body recognized that it had no ability to fight infection and so turned on the fever to try and prevent infection in the first place. Essentially we’ll never know.

Throughout the week I was grateful to mostly feel fine with some fatigue. The fevers stopped after the first couple of days, and then my chief complaint was a headache which didn’t respond well to Tylenol but was still manageable. I’m also very grateful that my fevers remained relatively low-grade and that all turned out ok. Neutropenic fever is something the hospital teams and doctors take very seriously. (I was in a room by myself to prevent infection, I wore an N95 mask in the hospital, diet is restricted to only cooked foods, no fresh fruits or veggies, no unpasteurized dairy, all meat is very cooked, no fresh cut flowers or plants etc.)

In the end I spent 6 nights and 6 days in the hospital if you count the overnight waiting outside the ER. I was REALLY excited to finally come home Thursday night and not have an IV and sleep in my own bed with all my own pillows and sheets. I really varied between freezing cold and very hot in the hospital room due to the fevers as well as an HVAC system that seemed particularly challenging to control. At one point I was so cold I ended up with 6 hospital blankets and the nurses then wrapped me with a blanket around my neck…I’m sure I looked pretty silly with just my head poking out of a pile of hospital blankets. (I ended up having Mike bring me a thicker blanket from home which helped…it was weird though, after the fevers stopped I was always roasting hot by the morning even though I’d be freezing when I first went to sleep.)

As the title suggests – the room did have a lovely view. Really! I was pleasantly surprised last Saturday morning to realize that my south facing 4th floor room had a gorgeous view of the PV Peninsula. It was nice to watch sunset each night as I did “laps” with my IV pole from one end of the room to the other to try and keep my back from completely going on strike from sitting in a hospital bed all day. Unfortunately I couldn’t take an effective picture because the window also had built in mini-blinds that you could open and close but not raise and so all the camera would focus on was the blinds.

In all it was a lot of waiting this week, not terribly exciting. I’m very grateful it turned out so well and that all is ok!

Now I’m home where I’m continuing to rest a bit more and spend lots of time petting Lily. I’m scheduled for treatment this coming Friday and we’ll see if that’s viable when I get my bloodwork done on Wednesday. The interesting thing is that my oncologist had me stay in the hospital until I was completely not neutropenic (well into normal people range) because she expects the values to drop again in advance of my treatment next week. So, I am crossing my fingers and toes that things hang tight a little bit. (I can have treatment if I’m mildly neutropenic, but not if I’m moderately or severely neutropenic.) If things drop then we’re back into the injection cycle.

For those not in SoCal, it’s hot as blazes here. 107 at our house today and that’s just nuts. I hope everyone is staying cool if it’s hot where you are. No matter where you are I also hope that everyone is having a fabulous Labor Day weekend and enjoying some rest and relaxation with those you love!

Thank you again to all of you for all you are doing to support us. We are grateful for all the prayers, positive thoughts, check-ins, meals, rides, and all the other ways you continue to help us! I was asked this week by one of my doctors how I felt my support system was and I answered “excellent” – so thank you to each and every one of you for being an integral part of our excellent support system that makes this all doable!

The now “standard” note at the end of posts for website navigation help:

Thank you for taking time to keep up with us and see how we’re doing as well as all the help!  Because, I think like me, much of the world does nearly everything on their phones…I’m adding this note to the end of posts to make website navigation easier if you are on a phone.  If you’d like to read other journal entries, please click here (oldest post is at the bottom of the page).  There’s also a “hamburger” menu in the top right of the webpage that can help you navigate between the journal, ways to help page, stay in touch, and welcome pages.   Please know that reading this page and thinking of us is help!   Thank you for your support in all forms! If you have any issues, please email [email protected].