Category Archives: Blog

Another virtue of the Dilaudid–aside from its miraculous ability to take my pain away in such a speedy fashion–is that it totally knocks me out. In hospitals, with nurses coming in every few hours, beeping IV pumps, the uncomfortable bed, etc., this is incredibly welcome. My last three stays here, as much as I’ve found this to be one of the nicest hospitals evah, were all punctuated by painfully extreme insomnia.  Last night, aided by Dilaudid, I slept a full night, and even when the nurses did come in to check my vitals and change out my IV meds, I just peered groggily up, offered them my arm for the blood pressure cuff, and promptly rolled over and went back to sleep. Well rested win.

Today begins Day 2 of my R-ICE infusion. Yesterday was an easy couple hours of Etoposide, a relatively painless and mild chemo drug (comparatively speaking). Today, I’m getting all four: Rituximab, Ifosfamide, Carboplatin, and another dose of Etoposide (R-ICE). I’ve had Rituximab before (the “R” in “R-CHOP”), and after that, the Ifosfamide is the most likely to cause bad reactions upon infusion. It’s the one where I need to be monitored for grade I through IV neurocortical toxicity: lethargy, disorientation, hallucinations/delusions, and coma (respectively).  Obviously, we’re hoping for zero grade or low grade. It’s also got some nasty side effects to look forward to, but they’re giving plenty of supplementary meds to hopefully mitigate those.

They installed a temporary PICC line in my arm for this first round of R-ICE infusions. They’ll actually remove it and surgically install a port catheter to replace it after this round, right before I leave the hospital.  They would’ve installed the port for this time, except it really should have a couple days to heal before being used. While I’m not thrilled about having a constant line in me, the number of needle jabs the PICC has already saved me–as it can be used for both infusions and to pull blood for labs—really makes it, and ditto the port, I’m assuming, worth it.

Aaand here comes the lovely nurse with my next lovely dose of Dilaudid.  Signing off while I can still sit up without listing…
  

In the hospital now, receiving day one of a a three-day infusion schedule of chemotherapy.

After oxycodone and morphine did nothing for my pain, they started giving me injections of Dilaudid (hydromorphone), which is a narcotic having five times the potency of morphine, and not only does it work, but its effects are almost instantaneous, knocks me completely loopy, and makes me extremely nauseous. Normally, I’d rather be in pain than queasy, but for this sort of pain and this sort of pain relief, it’s a fair tradeoff in my book.  

Talked to my oncologist about my revised treatment in light of the PET scan and biopsy results. I’ll be doing three rounds of R-ICE chemotherapy followed by a stem cell transplant. We might do radiation between the chemo and the stem cell transplant.  That’s still up in the air.

R-ICE is a higher dose chemo regime than R-CHOP was; it’s also more complicated to administer, needing to be infused over three days. Hence, I’ll be in the hospital during the beginning of each chemo round. I’ll also need to be hospitalized during the stem cell transplant procedure for something like three weeks straight.

For my stem cell transplant, what they’ll be doing is harvesting my own stem cells over the course of my next couple chemo cycles and freeze it. Then when it comes time for the transplant itself, they’ll administer an ultra high dose (lethal) of chemo which will wipe out all of my bone marrow/white blood cells. Then they’ll pump my own stem cells back in to rescue me. It’s a fairly brutal procedure, but the idea is to completely eradicate all cancer cells and essentially reboot my system, cancer-free.

Ah, and here comes the nurse with my next shot of Dilaudid. Will have to finish this post later because…wheee…. 

We’ve got an appointment this Wednesday to do a biopsy on the tumor, but the hopes I had that the PET scan results would turn out to be a false positive have been diminishing until they are essentially nil.

The swelling at the tumor site has noticeably increased in the short time since the PET scan, and even more telling, the pain from last year is back. It’s a very distinctive pain, unlike anything I’ve felt before all this. It’s unmistakable as anything else but a fast-growing mass pushing aside things in my head that really aren’t happy about being shoved aside. I’m back to taking daily painkillers, beginning to ramp up the doseages. And I remember why I was in such a hurry to begin chemotherapy, knowing it would be its own hell of sickness, weakness, and pain.

This thing growing in my head is aggressive. It’s scary-fast how quickly it has advanced already. Re-advanced. And now I just want to start knocking it back again, as soon as possible, before it takes back the hearing and breathing it stole from me back in September, before I lose any more ground to it. Even though I know that whatever our next treatment steps are going to be, they’ll be more brutal than what I’ve already gone through.

My oncologist called with my PET scan results. Inconclusive. As we knew already, the tumor has shrunk. It’s down to 2cm (from 7cm, what the October PET scan showed), but most of that is dead scar tissue. However, the scan showed a couple “lights,” spots of living cells. Whether those lights are malignant cancer cells or harmless non-cancerous cells is unknown.

So we need to biopsy them. My oncologist is in the process of setting that up. Not sure what sort of biopsy that will end up being, but “least invasive” was the catchphrase.

If the biopsy turns up clean, we’ll continue with radiation. If it doesn’t, it means more chemo, possibly a stem cell transplant procedure, or both. We didn’t go into details. Apparently, the radiation isn’t to kill any last remaining cancer cells but to do some other sort of mop up only after all the other tests show zero cancer cells.

Inconclusive. Unknown. If.

Finding out you have cancer is like having the walls of your house suddenly come caving in on you, the foundation of stability and security you took for granted becoming just so much detritus. And the requisite uncertainty and waiting that seems to be an obligatory part of having cancer is like someone tossing bucketloads of granite and cement on top of it all while you’re trying to dig your way out. Yeah. We hates it we do.

I’m trying really hard to be optimistic, or at least hold off my meltdown until after the biopsy results. But it feels like I was just beginning to get my life back, just starting to find my footing as something other than “cancer patient.” And the prospect of having to go through it all over again makes me want to kick my feet, howl, and sob.