Tag Archives: coping with cancer

Back in the hospital for round 2 of this cycle of R-ICE chemotherapy. Had to have a blood transfusion: two units of O+. I expected to have another allergic reaction, as I have for both platelet transfusions I’ve received so far, but the pre-transfusion meds of Benadryl, Tylenol, and hydrocortisone seem to be doing the trick. No allergic reaction. *crosses fingers*

Huge thank yous and big virtual hug to everyone who’s asked if they could directly donate blood to me. I’m O+, which means I can only receive O+ or O- blood products, but more than that, I’m a transplant patient with a really messed up immune system. There’s extra persnickety screening and matching requirements for anything I receive, making it terribly unlikely I’ll be able to use folks’ directly donated blood products, plus everything I receive needs to be irradiated, which is done off-site.

So between the time constraints and the persnicketyness of my blood product requirements, I can’t really accept offers of direct blood donations. However, I really do encourage everyone to donate to the general pool if you can. It’s because of awesome folks like you that I can get all the various blood transfusions I’m having to receive. *HUGE hugs*

Instead of a port, my oncologist decided to install a trifusion catheter in my chest. In addition to being a long-term catheter which can be used to draw blood and administer IV fluids and chemotherapy meds, it can also be used to harvest stem cells for my transplant procedure. It’s got three lumens (external tubing lines) of a couple inches in length which extend from the single catheter tube–which is a three-in-one configuration–tunneled under my skin.

The installation procedure yesterday was a minor in-patient surgery that took about 20 minutes in the operating room. (The prep and post took significantly longer, of course.) They gave me local anesthesia as well as twilight for it.

I’ve been twilighted once before, but it essentially knocked me out that time, and I don’t remember anything about that particular procedure. I do remember waking up and asking the time and being perplexed as to why Matthew found this so amusing. Apparently, I’d come around several times before, asked the time, and fallen back asleep–without remembering any of the previous wake-ups. I did, however, have complete awareness of having been rendered unconscious.

For the trifusion catheter installation, I remember the nurse telling me they were starting the anesthesia, staring at the IV tree, hearing the doctor saying he was injecting the local, feeling the needle prick and the burn of the lidocaine, staring at the IV tree, and then the doctor saying they were all done. Thing is, I don’t remember falling asleep at all. I even thought to myself, as they moved me to the recovery room, “Dang, I was awake the whole time. I was hoping the twilight was going to knock me out like last time so I could get some sleep…”

It only occurred to me on the drive home that I couldn’t recall huge chunks of the procedure–like when the doctor inserted the catheter, when they applied the dressing over it, and when they removed the sterile sheeting. But I could swear I never lost consciousness at any time.

Twilight anesthesia is weird.

Unsurprisingly, the catheter site aches. It’s on the right side of my chest, which makes it a somewhat ginger proposition to use my right arm. Getting dressed, ow. Reaching to close the car door, ow. Shoulder seat belt, ow. They say the pain is supposed to go away in a day or two.

On an awkward/amusing note, before the surgery, I asked the doctor whether I could still wear a bra with the catheter, and he assured me that the line didn’t go into the breast, so it wasn’t a problem. I don’t think he grasped the concept of “bra strap,” as while the installation site is under my collarbone, nowhere near my breast, the dressing and site of entry are exactly where a normal bra strap needs to go. I had to switch to a one-arm/off-the-shoulder bra configuration this morning. (Matthew has since informed me that most men, including himself, find the operation of a bra a mystery, and chances are the doctor indeed did not understand the complex and baffling mechanics of your basic bra strap. o.O )

I’m also finding my wardrobe options to be a bit vexing, as I’ve never shopped for shirts, sweaters, or dresses with the consideration of: “How cute will this be with three lines of tubing sticking out of my chest?”

This week, I managed to make it into work for one full day and one half day (probably). I’ve had an echo cardiogram, EKG, pulmonary function test, multiple labs, and a tri-fusion catheter inserted. I’ve also met with my transfusion coordinator, social worker, radiologist, and oncologist, submitted FMLA forms, and updated my co-workers on my preliminary out-of-office schedule. And I go into the hospital tomorrow to start my next round of R-ICE chemotherapy.

On the one hand, I’m really glad things are moving so quickly, since this cancer continues to be astonishingly aggressive. On the other, I am overwhelmed. And scared. And exhausted.

The best days were the ones when I could go into work. Being able to focus on something other than being sick and the treatment path I’m having to undergo is both rejuvenating and refreshing. Any time I can spend at the day job is beginning to feel like a luxury day at the spa.

Meeting with my transplant team, I got a better idea of the magnitude of the stem cell transplant procedure. I’ve been operating under the assumption that once I completed my three-week stint at the hospital, that was it; I could go back to work, resume life as usual, start running full tilt towards a resumption of normalcy.

I was so wrong.

I knew that the procedure will involve a total destruction of my immune system, utterly wiping out my bone marrow. I didn’t realize that it would also destroy my childhood immunizations. I’ll need to get re-vaccinated for everything in something like one-and-a-half to two years from now. And during this time, I’ll be at risk of contracting chicken pox/shingles, measles, and all the other lovely diseases one thinks are safely behind you as an adult.

Also, the weeks in the hospital for the transplant itself are only the beginning. With my immune system wiped out, even with the stem cell transplant coming to the rescue, I will be weak and unable to be around people and potential infections for upwards of months. They won’t let me return to work until my immune system stabilizes, and that is going to exhaust my remaining leave time as well as the three months of unpaid FMLA time I’m allowed. Even after I’m allowed to return to work, I will continue to have a terribly weakened immune system, suffer from fatigue, and all the horrible side effects of what will essentially be a lethal dose of chemotherapy, for upwards of a year.

So much for a speedy return to normalcy.

My transplant coordinator recommended that I try to take things one step at a time, but it’s hard not to stare at the big picture and gibber with anxiety and dread.

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.

Still can’t manage to make the stairs all the way to my office in one go without getting winded and having to rest. And the muscles in my legs are sore from a brief afternoon excursion on Saturday with Matthew to run some errands–nothing more arduous than walking up and down some aisles and waiting in line. I suppose it’s a good sign that I’m so impatient with the speed of my recovery. But that doesn’t help the impatience.

Tomorrow I go in to Emory’s Winship Cancer Institute for an early morning PET scan to see what the status is of my tumor, followed by labwork, my fourth and final lumbar puncture chemo infusion, and an appointment with my oncologist to discuss next steps–notably the timing for my radiation treatments.

Busy day.

I haven’t seen a scan since the first CT showed the 6cm tumor in my sinuses. My oncologist thinks it’s very likely that six rounds of chemo got all the cancer cells, but I can still feel a minor swelling in the right side of the roof of my mouth. It’s invisible to the naked eye, so much smaller than it was last October, negligible even. And my doctor says it’s most likely scar tissue, dead cells, not the remnants of a still-kicking tumor biding its time and waiting to start this whole nightmare over again. But I want to see proof of that on the screen.

And even if it’s not completely gone, I know Round 2: Radiation will likely stomp out the last malingering cancer cells. But I’d feel so much better if the radiation could be “just in case” versus “we need to do this ’cause it ain’t dead yet.”

This last round of chemo has been a rough one. Every single side effect I’ve had to wrestle with over the course of my treatment–nausea, deep muscle and bone aches and pain, fever spikes, peripheral neuropathy, fatigue, anemia, hand-foot syndrome–has flared up, as though to usher in one last reunion tour. I keep telling myself I just have to endure a few more days and I’ll be on the upswing but when I’m feverish, queasy, and hurting everywhere, it’s hard to think beyond the “now,” and the now sucks.

To take my mind off how sick I’m feeling, Matthew and I are having a Studio Ghibli marathon. Yesterday we watched Tales from Earthsea, The Cat Returns, and My Neighbor Totoro, all movies I somehow hadn’t managed to see before. Earthsea started out really promisingly but fell apart storywise about halfway through, but the other two were absolutely charming. We’ll continue the marathon with Ponyo today.