Tuesday evening marked the end of my third (and last) hospital stay. As more and more “lasts” are reached, the more concrete it seems that I will be through with this cancer.
Lately, I’ve started to think back on the last 6 months, and have been roughly adding up all the tangible experiences and treatments that I have undergone in order to help my body resolve this illness. In some ways, the list is a good way to remind myself that this was no easy thing to go through (as if I need a reminder of that). A quick (and, by no means comprehensive) list includes the following, in no particular order:
- 65 nights spent in the hospital
- 2 MRIs
- 3 CT Scans of various parts of my body
- 1 full-body bone scan (checking for other cancer)
- 5+ chest x-rays, and 1 x-ray of my mandible (all looking for infection)
- 2 echocardiograms, and 1 ultrasound (checking for infection, heart function and blood clots)
- 3 in-hospital visits to a retina specialist to confirm/diagnose retinal bleeding (due to low platelets)
- 3 (and counting) bone marrow biopsies
- 3 procedures to insert various catheters (both PICC and Hickman)
- At least 300 doses (and counting) of Heparin to flush and lock my catheter (about half of those administered by Virginia)
- 168 consecutive hours of a Cytarabine drip
- 9 doses of Idarubicin
- 50+ (and counting) units of platelets, packed red blood cells, cryoprecipitate and plasma (although, most of these transfusions were platelets and blood)
- 436 (and counting) 10 mg tablets of ATRA (the main medication I’ll be on for the next year)
- 13 injections of GCS-F
- 2 injections of Neulasta
- Countless other medications (mostly antibiotics and antifungals), including vancomycin, clindamycin, levofloxacin, ceftazidime, flagyl, ciprofloxacin, voriconazole, and caspofungin to name a few
- Many doses of demerol and dilaudid (to ease rigors from the many fevers and to kill pain. Of all the drugs I was given, these remain the ones I most looked forward to, since they acted immediately and quite effectively… not to mention pleasant side effects.)
- Countless blood draws (at least once a day while in the hospital, and every other day while out), usually for a CBC, but also to look for infections
Unfortunately, the more I think about the list, the more I think I have forgotten. Although, perhaps that is a fortunate thing. I’m sure it will be good to have some sort of record of this ordeal, but I’m also beginning to feel the need to move on.
My body has survived both the disease and treatment, and I would like to take on the responsibility of making sure this experience was not in vain. What that means, I’m not exactly sure. I do know that I will not look at my future the same. To use another cliché, I have been given a “second chance” to experience the life that I have left to live in a way that honors both the illness and coming through it. I’m sure there will be plenty of adventures ahead (good and bad), things not taken for granted (as much), trips and travels, the making of arts and crafts, good food and drink, and attempting to answer the question, “What will I do that will make today worthwhile?”
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.
It’s only a 20 cc injection of Idarubicin (pushed over the course of 15 minutes), but it certainly is potent stuff (note the gloves and blue apron—the nurse also had matching blue goggles, but she preferred not to have her photo taken). I will have two more of these over the next two days and then ready myself for the next round of fun. (By “fun” I mean a clearing out of my bone marrow (and other rapidly growing cells), which will require blood transfusions, becoming neutropenic, staying in the hospital (which they are hoping to keep at a minimum by starting me on antibiotics early and a white blood cell booster called Neulasta—both next week), and other inadvertent side effects—not that I can lose any more hair, but the nausea and sleepless nights I could probably do without.)
The good news in all of this is that this will be my final round of chemotherapy. As long as my bone marrow behaves and continues to not translocate chromosomes 17 and 15 in the retinoic acid receptor gene, I should be able to go about my business in a month or so. Of course, I think I will always have a little corner in my mind that will always wonder why, if my body got it wrong before, won’t it get it wrong again. I guess it’s a price we pay for being ever evolving creatures.
Bone Marrow Biopsy
And, since we’re talking about three, this is the third one I’ve had in as many months. My blood counts are still taking their time to recover. After another blood test this morning, I knew I was going to be in for a fun afternoon when the oncologist said, “Unfortunately, we can’t see what’s going on inside of you, and your peripheral blood can only tell us so much…”
I’ll spare you the gory details (although you are welcome to read the description from the link above), but this time around I was given some premedications (both anti-anxiety and anti-pain) which worked quite effectively (and quickly) since they were administered through my hickman. When asked if the Dilaudid was working, the nurse seemed quite amused at my description of it, “Sort of feeling like a warm, fuzzy teddy bear hugging my inner chest. So, yes, I’d say it’s working.”
So, back to no bathing for a few days. And, back to waiting… one day at a time, one day at a time.