The days immediately after treatment are not the time for clear-minded, sharp writing. But during these precarious and emotional times, keeping this blog current seems more important than my grammatical shortfalls. For whatever reason, though, this post has been particularly stubborn, requiring four days and way too many drafts!
Monday was a milestone in my cancer journey: day one of a new treatment.
Camptosar, FDA approved in 1996, is a brand name for irinotecan (eye-rin-oh-TEE-kan). It is a chemotherapy drug most often used for colon and rectal cancers. The most common side effect is diarrhea, which can be severe if not managed aggressively. The onset can be early or late. On Wednesday I began to experience the late-onset side effects. The cramping pain was much more debilitating than the diarrhea. But following a strict schedule of huge Imodium doses did the trick, and now I’m right as rain (I think). As with most chemotherapies, there is a laundry list of other possible side effects. This comprehensive list is courtesy of the ACS. My main side effect was just feeling like crap. Because that’s what chemo does: it makes you feel like crap. (Eloquent, I know…)
This is my third line of chemotherapy. I keep track of my cancer treatments and other milestone dates using a cool site called Timeglider. The events there link back to applicable blog posts too, in case you decide to check it out.
Beginning in May 2012, I had a cocktail of carboplatin, Alimta, and Avastin to try to control aggressive lung cancer growth. Although I enjoyed the treatment schedule (infusion once every three weeks), I experienced no improvement in my condition.
In July 2012, I began Gemzar (gemcitabine). This weekly infusion was very difficult for my body to handle. I had some nasty, uncommon side effects and was rather relieved when I learned it wasn’t doing anything to help my cancer.
Now I am revisiting the chemotherapy well in an attempt to halt the cancer that has metastasized to my brain. My doctor chose this drug because it has the best chance to be effective (not because it’s going to be the gentlest). The odds of it benefiting me? Who knows. And when my doctor saw the question coming, he simply responded: ”There is no other Jessica Rice.”
I began to press for more information. His next answer – the Camptosar brain met stats and his experience with a standard patient – was composed and sitting at the tip of his tongue. But I stopped him. I knew only his first answer was accurate.
There is no one else who has what I have, has responded to various treatments/trials in such ways, and perhaps, has even lived long enough with this very aggressive lung cancer to try what I’m attempting in controlling the growth of new brain tumors. I guess I’m pretty special, although not for the reason I would prefer!
My doctor once told me that every lung cancer patient – if able to live long enough – will get brain mets. Most don’t ‘get the chance,’ for lack of a better phrase. And for those with slow-growing varieties of lung cancer, that could be 10+ years! (I don’t want to incite any unnecessary panic.)
On Monday morning Seth and I arrived on time for my 8:15 appointment, and we didn’t wait longer than 10 minutes to be escorted to the back. I stepped on the scale and unwisely peered at my weight before heading into the exam room. Talk about adding insult to injury! (I should stop eating so much and retaining fluid once I’m off daily steroids.)
One nurse began the routine questionnaire while another accessed the port embedded in my upper right chest. The thick Huber needle didn’t hurt much. They flushed the direct access catheter with saline, and I made my standard funny face. I am one of many patients who can taste when some things are pushed into the bloodstream. Saline flush isn’t yummy, but at least I know when a vein is hit correctly!
The next step is to draw blood so they can run my ‘counts.’ This tells the doctor a number of things and assures that I am indeed healthy enough to receive treatment that day.
The nurse pulled back on the syringe. The saline was now tinted bright red, but it wasn’t pure blood. She pumped the syringe back and forth, back and forth. No blood.
(sigh) Sometimes ports are stubborn. And during my past two office visits, I’ve had to do some gymnastics to get the flow started. In 18 months of port ownership, I have had a real problem with it only once.
We tried the moves that nurses swear by. I gave myself a bear hug, stretched my neck around, lied down completely flat, raised my arm at various angles, and shrugged my shoulders. They flushed more, tried some heparin, more flush, a larger syringe. But then part of the plastic hub snapped off.
(sigh) They would have to remove the needle and stick me again. This one hurt briefly, but that wasn’t why I was fighting back tears.
I had remained quite calm for the first half hour, but I was starting to break. When a device implanted in you doesn’t cooperate, you’re allowed to panic. (I wrote that rule.) It didn’t help that two people had been hovering extremely close to me for a long time. I was physically overwhelmed by the invasion of my personal space. Knowing that I was reaching the end of my rope, we decided I would see the doctor and complete the rest of the exam before trying anew.
The port trauma was enough to keep me pretty quiet during Dr. Roush’s exam and our Camptosar conversation. He did the entire ‘this is your new drug’ song and dance, but much of it was a repeat of our phone conversation. He was thorough, and I didn’t have any new questions.
As I mentioned earlier, I refrained from pressing him for Camptosar odds. And I was in such a ‘bad place’ by this point, that my brain couldn’t have generated any positive conclusions from any data he could give me anyway. He finished his exam and asked the nurses to “tPA” my port.
tPA, tissue plasminogen activator, probably does a lot of things. But I know it as “Drano for ports.” A small amount gets injected just far enough to journey to the end of the port catheter: the tube that terminates at the top of my heart. Once there it breaks up the fibrin sheath that can develop over the end of the line. The build-up is like a flap. When fluid goes in it pushes open without a problem. But when trying to withdraw fluid (blood), the flap gets sucked against the tube end and nothing can come out.
The nurse injected the tPA, and I waited for an hour. Then… POOF! Lots of easy flowing, dark, rich, good, yummy blood. Yay!
I was exhausted and ready to go home, but the day’s events hadn’t even begun. My bloodwork was run, Dr. Roush approved my orders, and pre-meds were started. We were exactly two hours behind schedule.
It took more than four hours for the rest of the drugs to be infused. The pre-meds were the same I received with Gemzar: Aloxi, Decadron, Ativan, and Pepcid. Camptosar came last and took two hours for infusion. We had to slow the drip a little when my nose started running and eyes got watery. Moving forward, this will probably be a four to five hour day depending on how busy it is in the infusion room.
This is a weekly treatment given 3 weeks on, one week off. It is the same schedule I was supposed to follow with Gemzar, but my body wouldn’t tolerate three consecutive, weekly treatments. This is a totally different drug, though, so I go in expecting the best and this schedule:
Oct 20, Oct 29, Nov 4
Nov 18, Nov 25, Dec 3
After those two cycles I will have an MRI of the brain, and the radiologist will assess my progress. Hopefully there will be a) no new brain tumors and b) less suspicious “brain lint.” If brain tumors continue to grow, that will be the end of my Camptosar experiment. I’m not sure what drug or trial would be next. Those are concerns for another day.
This week I’ve focused only on recovering as quickly as possible. Today is all about packing and travel. The wait is over, and it’s time for our awesome weekend at the NASCAR races!