As regular readers have probably noticed, there tends to be a distinct ebb and flow to the posting on this blog. I should probably clue you in on the underlying code behind this: If you don’t see a post for a week, it’s probably because I had a decently good week and was busy basically living my life. It’s hard to know exactly what to blog about at those times, other than to say “all’s well,” so I generally haven’t. For those of you whose sole contact with me is via this blog, I apologize if this approach has left you wondering what’s up with me and if I’ve spent the intervening week lying in bed with a fever while gripping my stomach in agony. If it’s only been a week without a post, chances are good that is not the case.
But if it’s been more than a week without a post…well, that seems to be a bad sign for me. In the case of the past week, it was about as bad a sign as it could be, as a neutropenic fever landed me back in the hospital. We’ll get to that in a moment, but let’s talk about some good things first.
As I mentioned in a previous post, one of my brothers decided to support me and St. Baldrick’s pediatric cancer charity by raising money and shaving his head. What I didn’t know was that all three of my brothers were planning to shave their heads in solidarity with me. While we all used to rock short crewcuts when we were kids, most of them hadn’t been without their hair in a long time, so this was not a light decision. They were all as good as their word, however, so naturally we needed a bald and brotherly photo shoot to commemorate the occasion. I don’t want to sound arrogant, but we’re pretty lucky to all have fairly normally shaped heads. You’d think one of the four of us wouldn’t have beaten the odds and would regret this enterprise. Instead, I’ve caught my brothers unconsciously rubbing their new fuzzy heads on many occasions. When we went to Mass together on Sunday, only my brother Chris had shaved his head so far and he was practically glowing. From the stares, I think a lot of the parishioners probably thought he was the one with cancer. That might have been because he kept nodding off though, too. That chemo. Rough stuff.
So what happened after that? Well, one minute it was Monday evening and I was making monkey faces with my bald brothers. The next minute it was Monday night and my stomach hurt so badly that I was awake almost the entire night. When Tuesday morning arrived, I greeted it with a most unfortunate new symptom: dry heaves. It’s long been my goal in life to never throw up again, and I was doing rather well with that vow until my inner gears were grinding against each other in a most violent and painful way. The rest of the day didn’t get much better, as I was plagued by nausea, stomach pain and a lack of energy unlike any I had experienced thus far. I couldn’t find the energy to do anything. I had to steel my resolve, give myself a pep talk–yes, out loud–and then feebly tackle whatever mundane activity it was that I needed to accomplish. Putting on socks. Going to fill my glass with ice water. Sitting up in bed to take a sip from said glass of water. For one of the first times ever, I found it literally impossible to do any work from home. I didn’t even want to think about it. I couldn’t concentrate on anything except the bloated and awful feeling in my stomach and fending off the incoming rounds of nausea. I had no appetite and my entire daily meal consisted of a couple of crackers and some apple sauce. It was a bad day.
Wednesday dawned a little brighter, but ended a little dimmer, as my stomach ache was subsiding a little, but my temperature was rising. I had a 99-degree fever by the time Theresa got home. This development was not completely unexpected however, given the fact that it was now halfway through the second week after chemo and my white blood cell counts were no doubt dipping. Even after just three doses, the post-chemo progression of events was becoming all too familiar.
What happens from here is determined by which option my body picks in the Choose Your Own Adventure novel its reading: To spend the weekend in the comfort of your own home, let the neutropenic fever respond to Tylenol and turn to page 82. To spend the next four days in the hospital, steadily increase the neutropenic fever to 101 degrees and turn to page 59.
Unfortunately my body has now twice taken me to page 59. I spent Thursday night with a rather elevated (read: probably should have gone to the hospital) temperature, but I took some Tylenol and magically went back down to a normal temp before I went to sleep. I felt a bit feverish overnight though, and when I woke up, I was at 102 degrees. My fate was sealed. Since Thursday, I had also been dealing with an increasingly uncomfortable pain in my chest. I thought it was a problem of fluid in my lungs from the way I had slept or something, and it made me cough whenever I tried to breathe deeply. The new symptoms just never stop.
We packed our hospital bag and made our way to the virtually abandoned emergency room waiting area. I was called in for a chest x-ray and we were ushered into our ER holding cell. Little did we know at the time, it would become our home for the next six hours. I’m not sure what craziness was plaguing the Chicago area on a Friday at 10 a.m., but somehow the emergency room was eventually overflowing and the hospital was already short on beds. As they went through the familiar motions of collecting my blood for multiple bacterial cultures, inserting my IV, grabbing a pint of my urine and checking my vitals, Theresa and I pleaded with the ER doctor and anyone else who would listen that I please be released. I hadn’t shown any visible signs of infection and I seemed to get a fever like clockwork at this time (see chart above). Couldn’t I just drink a lot of fluids at home and take whatever antibiotics they prescribed by mouth? The answer was no, so we were forced to endure our home in the ER for a few more hours, watching episodes of Cheers on my iPhone and listening to the sometimes sad and sometimes hilarious adventures of the drunk woman admitted in the bed one curtain away from mine. I’ll spare you the details, but suffice to say that remarks from nurses such as “Ma’am, I want to remind you that there is absolutely no smoking in the hospital.” (twice) made us really curious about what was going on behind the curtain.
When a bed finally opened up after 4:00, I found myself across the hall from my previous room in 4 South. Many of the nurses and doctors still remembered us, and now we had the added reputation (that was already preceding us) of not wanting to be admitted to the hospital. Being admitted ended up being a really good decision, as the fever that had seemed so controllable by extra strength Tylenol at home had become unstoppable once we got to the hospital, and didn’t fully leave me until Sunday night. Fortunately, my white blood cell counts were rebounding like crazy this time. When I got to the ER on Friday, my neutrophil count was less than 100. When I left on Monday, it was more than 1,600. Crazy, right?! Thank you all so much for your prayers that no doubt kicked my bone marrow into gear.
The hospital trip was also useful in attempting to diagnose that ever-increasing chest pain I mentioned earlier. It turned out to be acid reflux rearing its ugly head once again–and I can now say that I would not wish that on my worst enemy. It feels like a pack of horses is running up the lower part of your esophagus and then running back down again. You wait in sheer agony for this to pass and the mere seconds of the episode feel like a lot longer. For a while during my hospital stay, this would happen pretty much any time I changed positions, which was a little inconvenient. The doctor prescribed an alternative to Nexium, which has definitely made me more comfortable, but I am still at the point where every meal is an experiment to see if the food will upset me, which makes me eat less, and I was still just randomly acid refluxing at certain points today. I’m really hoping that this medication will make it better and that this isn’t just the new reality until I’m done with chemo. I also might go see a GI doc to take a closer look at my innards. I don’t want something even worse to be going on down there without my realizing it.
For a week where new symptoms abounded, I found an animated GIF that pretty well sums up my experience of dealing with them:
You don’t see them coming and you sometimes don’t know how to deal with them when they get here. But you keep climbing. You ride them out until they subside or you find a moment of comfort and you savor it. There were lots of times this past week where I didn’t want to move because I had finally found a position where my stomach didn’t hurt as much or I could just sit without feeling discomfort anywhere. This experience has made me so much more empathetic to those with chronic pain and so much more grateful for the times when I don’t feel much of any symptoms at all.
After I didn’t have a fever for all of Sunday night, Theresa and I spent most of Monday watching the spring snow come down through our window as we waited for the blood-taker to come take my blood (she was six hours behind schedule) then awaited the results of my blood test (my soaring counts were my ticket to freedom) then awaited a visit by the two doctors who needed to agree that I could leave. When the ruling was handed down, I was pretty happy.
I was able to work mostly comfortably from home today and found out that the chemo I was supposed to receive yesterday has been rescheduled for Thursday. In all the excitement, I had pretty much forgotten that Monday’s chemo would have marked the hopefully halfway done point! Now Thursday’s chemo will claim that distinction and it will be on to a PET scan to prove that Lumpy is no more. We will return to the University of Chicago for a second opinion on the PET scan results and hopefully I will have just two more months of this stuff. Hopefully that doesn’t also come with a once-every-two-week hospital stay, but let’s not get ahead of ourselves. I highly doubt my body would keep choosing that adventure.
Wow, it’s really hard to stop watching that dancing GIF. You’re welcome.