First I want to thank those of you who offered advice and experience when dealing with treatment and medical opinions. I should have been a little more clear that we are fairly comfortable with how things have gone, and we definitely pose a lot of questions to the doctors. In fact, Virginia has sort of developed a reputation with the doctors, knowing that she asks important questions (especially during the days when I’ve been at my lowest and least able to keep on top of things). Some doctors even ask her whereabouts if they happen to be in the room and she’s away. So, it’s not without our wits and rights that we face decisions about my treatment.
I am still in the hospital (this is night #10), but have improved quite steadily. On Friday I had a long discussion with the infectious disease doctor that resulted in him backing off of pulling the hickman. The decision to do that was based on my overall fever curve. I think it’s good that there isn’t just one person making decisions about my care. The hospitalist basically runs the show, but gets input from the oncologists (mainly), and if needed, the infectious disease doctors. Of course, this means having a pretty steady stream of visitors throughout the day, but that’s become so routine with me, that I hardly mind anymore. It’s still nice, though, once 5 p.m. rolls around I’ll have a relatively quiet evening without much interuption.
So, we are back to waiting for my white blood cell count to be high enough for me to fight infections on my own. I’ve started receiving a daily injection of GCS-F to help boost them, but so far they’re staying low. I went in on Sunday at 0.1 and, 10 days later, am at 0.4 (I should be at or around 1.5 or 2).
This means, of course, more waiting. But, we are quite used to that.
Well, despite the good news about my bone marrow, I still am dealing with having it newly “rebooted.” So with all the cell counts declining it was only a matter of time before I would need some medical intervention.
I was admitted back into the hospital Sunday night. Virginia actually had to call a few times (the first time we were told to take a couple of Tylenol and see them in the morning). Finally, after my temperature had reached above 103 they started to move things along, transferring a non-cancer patient to another part of the hospital, so I could have his room. I’ve since moved two more times and am back in the room that I was originally in when I first started all of this back in March (nothing like coming full circle for the last stay).
My fevers which have been pretty persistent, and in some cases quite high (so far 104.9 is the highest) are due largely in part to a bacterial infection by a strain called Gemella morbillorum. Of course the infectious disease doctors have tailored the antibiotics, but since I still have been getting fevers (although fewer and less severe) they are wondering about other possibilities.
One thing we’ve found out about our stays in the hospital is that there isn’t a whole lot of patience when it comes to seeing if a treatment is working. I’ve already had another echocardiogram to see if the bacteria has seeded in one the valves (which it hasn’t) and an x-ray of my jaw to see if there isn’t a pocket of the buggers hanging out (haven’t heard about those results, yet). Now rumors are spreading about the possibility of removing my hickman line. I’m like, “can’t we just wait a wee bit longer before doing anything rash.” The antibiotics are supposed to do the trick, right? I don’t know, it’s a little frustrating being at the mercy of some of these doctors knowing that within another week or so my white blood cell counts will start to be high enough that this won’t be an issue anymore. But, I’m not a doctor, and acknowledge that I don’t have the same understanding as they do.
In the meantime, I’m happy that I’m starting to feel better (the last couple of days totally wiped me out) and can actually sit up for more than 30 seconds, and grateful that there are blood donors for the platelets and packed red cells that I’ve been receiving nearly every day now since Friday. It’s the little things.
That’s right. The oncologists agreed to send me home today. I’m still neutropenic, so they made me promise to come back if my condition changed, and packed my bags with a whole arsenal of antibiotics. So far, so good. I’m awfully tired (2-and-a-half weeks of hospital stay is no way to build strength and endurance), but very happy to be able to spend the better part of the day hanging out somewhere other than room 8109. And, since it is our 8th anniversary today, it’s especially nice to be home.
A week ago Sunday (has it been that long?) I was admitted back in to the oncology ward (referred to as 8 East – has a better ring to it, doesn’t it?). The fevers I had on Sunday and Monday went away (probably because of the antibiotics they had me on again), but my numbers are still taking their time to get back up to where I can fight off infection. So, even though I’m feeling relatively good, here I am. This time around I’m one of the easy patients — other than 3 transfusions of platelets and 2 transfusions of packed red blood cells, I’m just sort of hanging out (although, the days when my hemoglobin is down I tend to sleep a lot, so that doesn’t really count as hanging out).
So, the other day they talked me into getting a DVD player in the room (provided by 8 East) as well as a Playstation (a PS2, if I’m not mistaken). The last time I spent any serious time on a gaming console was when I bought a second-hand SEGA Genesis with my hard-earned allowance in junior high. Twenty years later and a couple of hours of some arduous training, I still might have a chance to become a mechanized cop ready to free the world of terrorists and robots. Of course, Andy (the nurse that hooked me up with this particular distraction) has coached and encouraged me a little (in between his rounds, of course).
So, while I save the world from the bad guys, I wait here in the hospital while the real heroes (sorry for the cheesy comparison) work on getting my bone marrow to start functioning properly again.
I’m hoping to head home early this coming week, so keep your fingers crossed. And, after a few days of rest and rebuilding of strength, I’ll be repeating the whole process all over again. Let’s just hope they don’t overwrite the memory card on the PS2 between now and then…
Well, that patience that I was talking about could have come in handy yesterday. I spiked a fever in the morning, and after consulting with the on-call oncologist, went to the emergency room. Eight hours later (most of that time spent sitting and stewing about the inefficencies of the system, lack of communication and the fact that the eight-hour wait could have been avoided if they had just admitted me like last time) I was welcomed back by the staff in the oncology ward for another stay.
So, here I am again, waiting for my blood counts to go back up, waiting for the fevers to subside.