2018 Feb. 23: The Big Chill

It's been two weeks, which seems like such a long time, but then again, I don't know where the hours and days have gone. I just know that suddenly, March (Colon Cancer Awareness Month!) is right around the corner. Which means it's almost spring.

I keep telling myself that as I gaze out my frosty windows and hear the wind blow. I keep telling myself that as I pile another blanket on top and silently curse the dry cleaning guy who broke my mattress pad heater. I tell myself that as I empty ANOTHER box of tissues into the trash and take more cough syrup. It's almost working. 

It's almost working, which means it's mostly not working. I have spent more mornings and afternoons in bed lately than absolutely necessary. First, it was a cold. Then, the flu stopped by. Then, another cold. We went to Hawaii and EVERYTHING WAS BEAUTIFUL...And then I came back and had a lot of trouble with the chemo cycle that began the week after vacation. I had nausea - oh! the nausea. I may as well have been sailing on the roughest seas in the world clinging to a red Solo cup. I actually threw up. I threw UP!  This has only happened 4 or 5 times, tops, over the span of my entire cancer career.  I hate throwing up. I hate it with a hate so pure and so concentrated that even the tiniest peep of a puke is wrestled to the ground by any means necessary. I have an esophagus of steel. I have every single anti-nausea drug available to cancer patients at my beck and call, including a couple of the off-label ones. But it didn't matter, apparently, when it was three weeks ago. Because I definitely threw up. 

I threw up that Thursday. I threw up that Friday. And then, even though the chemo cycle I was on gave me Saturday and Sunday off - you're not going to believe this, but I threw up on SATURDAY, too! Why?? Why me?  I didn't know.  I still don't. 

But I DO know one thing. That vomit comet...I know it came back again. The following week (so, four weeks ago?), during the second week of my chemo cycle, I got nauseous all over again, all week long. And by the end of the week, I started ralphing AGAIN.  It was the worst kind of splat - the surprise kind, where I was sitting there, all busy, bothering no one, not even making any kind of trouble AT ALL whatsoever, and I stopped typing, and I looked around my room and I thought, oh! I better get the hell up, because I'm about to barf.  And so I pelted over to the bathroom and sure enough, that's what I did.  There wasn't any dog-style, chugga-lugga, "look out everyone within a mile of me, I'm about to blow chunks" kind of drama. There wasn't even any time to feel hot and then clammy, or to wonder if I was sick. Nope. Just barf. B. A. R. F. At least, I made it to the toilet, I suppose. That's a blessing, because the only thing worse than barfing is having to clean up your own barf. It should be illegal. 

I bet you're wondering right now if I'm just going to keep nattering on about barf for the entire post. No. No, I am not. I am just setting the stage. Giving you a context. A TONE. A theme upon which to ponder. And that theme is barf. Barf and discomfort and cold.  

Did it work? Do you feel discomforted, and cold, and grossed out by barf? Sorry about that, but if so, I'm a little bit glad, because that was my point. This has been my existence for most of the last month, after all.  After the chemo portion of the last cycle ended, I stopped barfing from it, but then I got another bad cold. And THAT has lasted a little over two weeks as of this writing, and I have been hacking and blowing my nose and sleeping late and having headaches and, yes, throwing up! This time, it's from coughing so hard. It happens at bedtime, or wakes me from my beauty slumber. I will spare you all of those sticky, icky details. But you get me, I think. And you will say nothing when you see me next and I look more like a vicious bear than a woman who got her beauty rest. Nothing. You will smile and pat me on my paw and perhaps hand over any honey that you happen to have. 

It was in the midst of all this gross-a-rama, then, that I had scans.  Like most stage IV peeps, I get scans as often as possible, so that everyone can see what's actually going on in there. It's not a perfect approach - I keep asking them to implant a little oven light instead, so we can just plink it on whenever we want to take a look at my organs, but no one seems to take me seriously.  So, I guess the scan approach is just going to have to be the answer for now. Anyway, I get my scans every 8-10 weeks (usually closer to 8). I get a non-contrast CT scan to my chest (I have lesions - fine! tumors, but I hate that word - on both lungs) and then an MRI to the abdomen/pelvis (including the liver). The CT subjects me to lots of radiation, and the MRI is a magnet type deal.  Usually, you get a CT scan with contrast, where you drink a large-ish bottle of chemically tasting, super sweet in a weird way water product, and they image you normally and then again with injections of dye that the bottle of stuff (glucose?) helps highlight. But I'm allergic to the dye, so no contrast for me, thanks. Nope. Not unless you want to see me turn into a pufferfish and possibly get anaphylaxis, too.  

Now, it's time for a quick huddle and newbies, listen up! I am both a) very anxiety ridden (why the hell wouldn't I be, right?) and b) very loud about my anxieties, so I usually manage to schedule my scans on Wed afternoon or evening and then see my doctor right away on Thursday morning to review them. A Thursday AM scan and then review that same afternoon is also great but it takes longer to read the MRI results, so that doesn't work as well these days. The overall point is this: get your scans and your review done at the same facility, and remember that they're not like polaroids, where you have to wait around for them to develop before anyone looks at them. They can be interpreted right away. Making you wait a week or more - that's just downright cruel, because the scanxiety is the worst part of it all! Don't let them do that. *huddle break* 

SO. This week, I had my scans on Wed starting at 12:30pm and then review set for Thursday at 10am. I had my CT right away at 12:30 and then sat around waiting and waiting and waiting some more in a back hallway somewhere, covered with piles of warm white blankets and reading a book on my phone, until almost 2:30, when they finally took me in for my MRI. That went swimmingly, I suppose, although I was in the teeny little chamber MRI where my nose literally almost touches the top of the chamber, and I REALLY didn't like that at all. A girl's gotta be able to, I don't know, BREATHE?! Anyway, I survived it and then I changed and Nick got the car and we drove home...and then something really strange happened. I received a message from the hospital right as we turned onto our street. "New Test Result!" It promised.  I told Nick, who was busy parking the car.  My hands started to tremble. "Why?" I asked him, "would they send results now? This can't be good." We looked at each other, and looked at my phone, and then I logged in and sure enough, the results of my CT were already back (you should know that CT results don't just pop into the app once they're done - my oncologist has to sign off on them so that I won't get results that haven't been interpreted already and thus panic unnecessarily. I have never received results prior to arriving at the office for my review appointment.). I opened them. 

The top of the scan notes had comments from my oncologist: "Unfortunately, looks like some growth here. I have three plans in mind (he listed them) and we will discuss options tomorrow." 

Well, Fuck. I picked the wrong year to quit drinking. We read on, Nick and I, and discovered that all of my existing lesions had grown - around 10% each. There was a possible new nodule but upon a closer look the next day at the scans themselves, neither my dr nor Nick and I were convinced that the call-out was a good one. Everything else looked okay, which is good because I don't have any lesions anywhere else. So this means no new activity in other organs or anything like that. But my love affair with Lonsurf was definitely over. I should have known something was up with all that barfing! My entire body was like, hey, Jess! This is just poison that you're throwing down your gullet for no reason now - it's not doing it's damn job anymore!!!! 

Is it terrible to admit that I'm a little bit glad the Lonsurf era is over? It made me so queasy - and then barfy!  I really love the philosophy and planning behind it, but I never really felt convinced that it was working well for me (it did, though - I had a completely stable scan and then a scan that showed some minor shrinkage before this last disappointing one!). Alas, poor Lonsurf. I knew him well, Horatio. 

As promised, we discussed options on Thursday at my official review. The three avenues that my dr suggested were (1) clinical trials (2) stivarga and (3) irinotecan/erbitux or vectabix combo. We also talked about SBRT and ablation therapy interventions on my existing lesions. 

I decided on Wednesday night that I wasn't ready for another clinical trial now. When I entered a clinical trial last year around this time, I did so because a) my disease was stable and b) the trial looked promising and c) I could return to conventional therapy afterwards. At this point, my disease is NOT stable, but rather is growing. I want to beat that sh*t back as aggressively as possible for as long as possible before turning attention to clinical trials (it's selfish of me to think this way, I know, because I should be helping with the longer term project of curing this fucking disease once and for all, but I still think I'm doing my part. Hell, all that barf last month alone should have been enough to get me a special patch of some kind to put on my Cancer Girl vest. (Aside: OMG, a Girl Scouts- like cancer club?! I am SO going to go somewhere with this! Imagine the patches!!!! Imagine the accessories! The socks! THE BEANIE.)) But there you have it. My dr. agreed that we should stabilize the disease first, and also pointed out that my recent oxygen struggles make it hard for me to qualify for a trial right now in the first place, and most of the immunotherapy trials have pneumonitis (like pneumonia but caused by radiation or immunotherapy rather than bacteria) as a common risk or side effect, and I can't afford to squander any lung power.  So, option one was out. The Stivarga is another newer drug that I've heard some people having anecdotal success with, but its clinical data isn't overwhelming, so I didn't like that either. That left me with the combo.  And that's what I'm going with for now. I start next week. It will be by infusion, every other Thursday. Each session will take 4-5 hours from start to finish.  I still owe you the info about what to take to Infusion Day Camp! The football is a good start, but there's more. And now I'll be especially ready to give you all the deets. See? Everything happens for a reason.*    

It's a combo many Stage IV CRC patients have heard of, and often have even had. I've taken it before myself, in the spring of 2014. I stopped because it worked well enough that there wasn't much to track after 4 cycles - my lung nodules were teeny then, and I didn't have disease apparent anywhere else.  So it should be a good choice for me, even though it's a repeat. It worked, was used only briefly, AND I haven't had it in 4 years. On the other hand, it is a repeat, and psychologically, this is a tough obstacle to encounter. It's official: I don't have a ton of treatment bullets left in my proverbial holster at this point. Best case scenario, of course, is that by the time this combo stops working, there will be new drugs coming to market or late level clinical trials open to me. And there are other options I've had before that I stopped taking not because of disease progression but rather because of toxicity (usually, my platelets gave up and stopped coming out to play), so I can return to those with little concern that my cancer has somehow become resistant to it.  But it is still unsettling. Deeply unsettling. 

The combo itself, irinotecan/vectibix (or erbitux), is also not particularly fun. Irinotecan has been a workhorse of a drug in the CRC world for decades, which isn't particularly exciting - but it's consistency as a top-performing first and second line of defense is awfully attractive. It's nickname is "I run to the can," because cancer patients and staff are funny, funny people, even in the shittiest of circumstances (ahem). It generally gives the patient wicked digestive troubles. It also causes major fatigue and often makes your hair thin, or even fall out all together. My hair thinned a bit when I took this combo last time, but no one knew besides me and my hair dresser (and my vacuum cleaner).  The erbitux/vectibix (two different drugs that target and attack almost the same exact way - I'll only take one of them, likely the vectibix) medicine is also quite a gal. It's a biological agent, so not a chemo (chemical) therapy, strictly speaking; instead, it's an EFGR inhibitor, which means that it latches on to a certain protein so that IT cannot get to the cancer cell and give it directions to divide and multiply.  This is one of those drugs where knowing your biomarkers (the results of your genetic testing) is vitally important: if you have a certain marker, the drug doesn't work for you at all, and you've just wasted your time. 

Almost as importantly, you've wasted your face and your mouth, because this biodrug is really tough on your skin and your mouth/throat. Medicines that fight cancer attack the fastest growing cells in your body, because cancerous cells grow way too fast, which is why it's such a problem, and this one is no exception. One of the places where your cells grow fast are inside your mouth - you know, your gums and all that fragile, pink skin on the roof of your mouth, in your throat, inside your cheeks - and this drug seems to hit those cells as it targets the cancerous cells. At least it did for me, because I got big, white, painful sores in my mouth and throat. Don't indulge in that freshly squeezed orange juice on the counter, is what I"m saying. OW. It also, for whatever reason (and I'm sure you can google the reason, but I just don't have the energy), makes most of the people who take it break out in a terrible skin rash. The rash extends to your face, scalp, chest, neck, and shoulders, and it's like sandpaper - tiny little white bumps as far as the eye can see. It's itchy and it makes your face feel really fragile and dry. Press on the bumps against the warnings of your pharmacist, your doctor,  and your own good judgement, and you'll see that, yes, they're teeny little whiteheaded pimples! And if you - again, against EVERYONE's recommendation and with the knowledge that it will be PAINFUL and USELESS and could lead to an INFECTION - give in and squeeze just one teeny little bump? According to someone I know who is very dumb and did this herself, you'll feel triumphant for about 1/10 of a second...and then your skin will likely start to crack or bleed and (this is the kicker) the little bump will return with its tiny white top after just an hour or two. In other words, it's pimple purgatory.  Just when you think cancer couldn't have any more evil tricks to play...along comes Erbitux to torture you. 

Ah. So, to sum up:

1. I barfed a lot during my last chemo cycle. In fact, it was so much that when I discovered

2. Lonsurf was no longer working and I'd had significant growth across the board at scan reviews on Wednesday/Thursday this week, 

3. The thought of dumping Lonsurf made even the new regimen of Irinotecan/Erbitux seem not so bad.

4. Also, I'm starting to repeat drug therapies, and that skeezes me out more than a little. 

I think that's all for now. After regaling you with barf, disappointing you with my scan results, and then repulsing you with the side effects of my new course of treatment, I think my work here today is done. Go out and eat Girl Scout cookies, enjoy your flawless skin, and consider sending me giant wooly sweaters, striped leggings, and hand-knit socks to keep me warm. And maybe some hair bands that promise to be kind to my soon to be assaulted locks.  Cuz I'll have to venture out into the cold world of reality this week to get my first infusion. Cancer doesn't care that I'm too cold to leave my fluffy pillow and blanket den! 

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*I do NOT believe "everything happens for a reason" or that "God only gives you what you can handle" or that "Jesus wants you to suffer."  Because that would be one messed up deity. I mean, really? What God thinks things like, "hey, Pilar could really use a few more catastrophes in her life!" or "I've been watching Morgan and he has been waaaaaaay too lucky lately. Someone put the neighbor's puppy in his driveway tomorrow night when he's due home from work..." No. Just - NO. The reason bad things happen is because bad things happen. End of story. Massage your reaction to those bad things any way you'd like.

If there's any micromanaging at all, I hope it's more along the lines of, "let's play another round of Animal Creation, angels! Today, I'm thinking....fluffy tail, a long snout, big round eyes - annnnnnnd WINGS!" Angels: "Nooooooooooooo..." God: "C'mon! It'll be greaaaaat!!! Last one to the breeding grounds has to tell the platypus that his feet were a mistake!"