#folfiri

It’s been two chemo cycles since my last entry. Feels like there should be more, because there should be more. Getting my blood and platelet levels to line up at the right time becomes more and more of a cat-herding situation each cycle. We’ve asked a lot of my marrow, so I can’t get too upset, but it has meant treatment delays. That doesn’t mean things haven’t been eventful.

For instance, I went to the Emergency Room for the first time in nearly three decades. They call it the Emergency Department now, which makes sense, since it’s a whole bunch of rooms. There may be one particularly important Emergency Room (Oh Hai, Patient), but I was not in that one. If not for the pesky cancer, there would have been no visit at all. That’s not a luxury I get these days.

It was either a 24-hour stomach virus or food poisoning. Give my unexotic food palate, the former was more likely. Whatever the source, it brought wrath-of-god-level expulsion for a full night. At one point on my bathroom floor, I hallucinated Linda Blair from The Exorcist floating above me, giving a slow clap of respect. Usually, this would be something to ride out with ginger ale and ice chips, but this event left no doubt by dawn that a hospital visit was in the cards. Apparently, Tuesday morning is an ideal time to go the ED, as there were very few patients, and otherwise idle techs fought over me (at least in my head they did) to get all the necessary tests run. Four hours and a few bags of fluids later, I was back home and mumbling vengeance against the unseen foe. Unsurprising, this delayed treatment. Like having a tornado hit while still cleaning up from an earthquake.

Once I get to Camp Chemo, things progress smoothly. The FOLFIRI dehydration remains strong and arid, leading to some other secondary symptoms I won’t get into today. On the flip side, nausea is off the radar most of the time, there’s definitely less of it to deal with than at any point during 20 Gemzar/Cisplatin treatments. Still two more cycles (I think) before the next scans cautious optimism remains the Soup of the Day.

Enough medical jargon, BAG UPDATE. I searched online for an appropriately unique and offbeat bag to hold my 46-hour home treatments. You can get fanny packs customized for anything these days, although 90% of the business seems directed toward sassy bridesmaids. Nothing really stood out to me, and I turned in desperation to wild lands unknown: Etsy. There, I found my bag. That’s not technically correct, since Etsy isn’t a physical place. But Bulgaria sure is.

To call Cold War Bulgaria an uncertain place is understatement. At one time or another, they were on good terms and bad terms with every player on the map, it seems. For this story’s purpose, the important event is that at some point in the 1970s, the Soviets stocked a warehouse near Sofia with a bunch of military sundries. And then… nothing. Decades passed, the U.S.S.R. fell apart, the warehouse was abandoned. Eventually, the warehouse’s contents sold at auction, an entrepreneur bought some lots, put them on the web, and that’s how I’ve ended up with a Soviet messenger bag for my chemo after weeks of postal limbo and odd routing.

I like this bag’s history. Created for a darker purpose, forgotten for decades, then rediscovered and repurposed for a more noble role. A role that led to its presence at a Ugly Christmas Sweater Karaoke Party. The Reds never saw that coming.

 Last year, in the world of weird self-challenges that this journey has helped me develop, I did stand-up comedy the same day I had chemotherapy. This time, I went and sang karaoke WHILE getting chemotherapy. As the pump pushed FOLFIRI through my bloodstream, I pumped out some fair-to-middlin’ Robert Earl Keen. It was fun, the crowd was kind, and another item was checked off a list that doesn’t exist until I think of new creations for it.

 And the creation will continue. For the final song of the year, a band that provided a driving beat when needed. We’re almost 20 months into this journey and we can’t stop now.

It's been a while since I announced, in perhaps a rather dramatic and arm-waving manner, that I had been diagnosed with terminal cancer. I was then inundated by lovely messages. (If you fancy getting washed warm by that wave of loveliness, then check the tweets I 'liked' on Twitter). Many people have also helpfully hopped on to the running boards of my faltering Facebook jalopy. But how am I doing? I have often felt the need to update you on that front because lots of you ask me.

However, for a long time, I didn't really have too much to tell. I was mainly just getting used to people smiling at me with their heads slightly tilted to one side - the accepted international shorthand for 'sympathy'.

I am still working - and still doing normal things - and embarking on new chemotherapy. In fact, I am writing this from my chemotherapy bed. I'm currently plugged in for six hours of liquid poison.

You know what? I'll tell you about my chemotherapy - that's what I'll do. Other people may be on the same treatment. Some may be about to be. Perhaps I can tell them and you about how my treatment happens.

(Also, don't forget, this saves me from telling all my family and friends the news over and over again - I can just do it here, once and point them to the link.) Spoiler alert - if you haven't got the time, energy or inclination to read about all that you can scroll to the bottom to find out the answer to the question "How are you, Simon?"

My oncologist - an amiable cove who likes to wear a bow tie - told me: "My job is to keep you as healthy as I can, for as long as I can." While admitting he could not "make the cancer go away"- he seems reasonably confident he can keep me toddling along for a while yet.

He told me of a patient who was in similar condition to me. "That guy comes in for chemo once a month and he's been doing it for three years now. He's not getting any better, of course, but he's not getting any worse."

I'll have some of that, I thought. Something to aim for, if nothing else. Bearing in mind, I had been told that I had anything from six months to two years left.

So, I go in to the hospital every other Monday. Where I am right now. I sit on a bed and they plug me in to the matrix. You may have seen saw my 'portacath' - it's a brilliant, one-stop shop where they can take blood, give blood, insert chemo, even contrast dye for CT scans. All without the pesky "sharp scratch" phrase the nurse says when taking blood with a needle out of a vein in your arm.

Seriously, everyone should have one. It makes everything so much easier. In fact everyone probably will in the future. We could put food into it. And booze. And vitamins. And software updates. And cheese. Or whatever passes for cheese in the future. Anyway. On that Monday, they don't just pump in chemo. Things have moved a long way forward since the days when - as my doctor said - "we just chucked the poison in you and let you feel ill for days." They now pour in anti-sickness drugs, anti-histamine, loads of stuff to stop you feeling lousy.

Then the strong stuff. The first of the big drugs. The cetuximab. You can click on the link if you want but it's not strictly chemotherapy. It's a 'monoclonal antibody' - a biological drug as opposed to a poison. In terms I can understand, it attaches itself to the cancer cells and turns off the 'signalling bit' - the bit that says to other cancer cells "Hey, let's divide and grow bigger and bigger inside this warm body and then finally make this man's family sad for a really long time."

Then I have irinotecan. This one's also pretty clever. It stops the cancer cells from getting the food they need to divide and grow, That confuses the cancer cells so much that the DNA of the cell gets all tangled and stupid, so it CAN'T divide.

Yes, I just called a cancer cell's DNA stupid. Let nobody tell you I'm not "fighting back" or "battling bravely". I'm practically Spartacus, here. Then the last bit. The nurses attach a cocktail of chemotherapy to me and send me on my way. I wear it around the house and office for two days.

The cocktail is called FOLFIRI. It attacks the cancer cells. Blasts them. And blasts lots of me, too. It remains plugged into my chest for 48 hours. It comes in a little thing called a “Baxter bottle” and the nurses gave me a wee sleeve for it, which attached to - yes, the horror - a bum bag belt. A bum bag. *Oscar Wilde voice* "A bum bag?"

I didn't fancy walking around looking like an American tourist: "Excuse me sir, is this the way to Lie-Cester Square toob station?" so I ditched the bumbag and put the bottle in the hood of my hoodie.

It's perfect, it's discreet and it makes me feel like a benign robot who is being refuelled with special, futuristic oil. I may even bring out a range of natty "cancer hoodies" and go on Dragon's Den. I just need a catchphrase.

(I usually hide it deep in the hood. I made it more visible so you could see it) Two days later, the bottle comes off and I wait for the "tunnel". The chemo tunnel, as I have christened it. Usually, by the Friday, I start to feel really tired. By Saturday, I'm fully exhausted and stay in bed all day. I'm like a mobile phone with 1% battery. I can wake up, tell the time, and then go back to sleep. Nothing else. Same for Sunday, too.  By Monday. I'm usually starting to feel better. And I go back to work.

That's kind of it. The worst of the side-effects. Really. Not so much of a crusading hero now, am I? Sure, there's also this rash that covers all of my upper body. (It looks like this) Sure, trips to the toilet don't make me walk out afterwards with the usual spring-heeled joy. Sure, there is some pain - mainly a low abdominal throb - but so many people have worse.

It would be annoying though, wouldn't it, if I did all that and it made no difference to my chances? If it didn't at least slow down the growth of the tumours? All the pain and no gain? I was sometimes worried that would be the case. Well, that's why I'm writing this today. I have had news. Cautiously positive news. I had a CT scan last week and the results came back today. They compared it to a scan that they took in November 2016. The one that brought the really bad news.

I was nervous, about the results, of course. I had mapped out the possible/feasible outcomes in my head before coming to hospital today. In my opinion, from best to worst, they were:

Tumours are shrinking.

Tumours have stopped growing.

Inconclusive scan.

Tumours are still growing, but slower than expected.

Chemo is not working. Cancer is growing and unaffected and perhaps in new places.

Today, the oncologist told me "it's a good scan". He said many of the tumours* inside me have shrunk a bit. Some of them by a lot. Yes. Good. (*I originally wrote 'my tumours' but fuck that, they're not mine).

So - I got pretty much the “best” news I could feasibly hope for, within the parameters of my situation. I’ll take it. I’ll take it cautiously, but positively.

It is a lit match in the chemo tunnel. Not showing a way out, but showing a way.

We will carry on with this chemo for at least another cycle. A surgeon will look into whether they can cut out some of the tumours (again, to extend life). I may have a break from chemo, or I may go on to a more relaxed regime. We don't know yet. So, there you have it. Cancer is still going to kill me. But not today.

And probably not tomorrow, either. For those who scrolled to the end, here's the question and its answer. Question: How are you Simon?

Cycle 1 of FOLFIRI is complete. To follow my treatment schedule to the letter would involve getting chemo on Thanksgiving and I’m not subjecting anyone to that. Instead, Cycle 2 will start on Cyber Monday. That’s after I observe Small Tumor Sunday. Which is wishful thinking, but hey, it’s the holidays.

Overall, the last two weeks have been bearable. Many of the scariest potential side effects didn’t appear. Some nausea, not as much as the last drug cocktail. My hair in thinning again, still have everyone on standby for a dome reveal/photo shoot if full alopecia manifests. The idea still doesn’t sit well (Sitwell) with me, but I’m becoming more accepting of the possibility.

The biggest side effect to date is the dryness. So, so dry. Dry to the point that my fingertips are in a constant state of semi-prune, like I’ve been in the pool. It got to the point where I couldn’t unlock my phone, as it refused to believe that I was putting a fingerprint on the reader and not an actual prune. This is way better than the other potential fingertip malady of neuropathy, hence my joking about it without much alarm.

(Side note: Already, spellcheck wanted to make “alopecia” into “special” and “neuropathy” into “nephropathy,” the latter of which is kidney failure, so I’m not diggin’ on the negative attitude here.)

The fanny pack was in fact just that, a plain black fanny pack carrying a small pump and a bag ‘o chemo. The pump whirs and clicks every 20 seconds or so, but a white noise app is able to drown that out well enough for sleep. The awareness of carrying around something attached to your bloodstream for 46 hours takes some getting used to and makes the time seem to pass slower. I realize that many people have more cumbersome medical devices attached to them for far longer, but I’m a rookie at this stuff. For the first round, I just didn’t leave the house much.

Plenty of swagification offers (Offered spellcheck replacement: “sanctification,” nice!) and supplies have been given, but so far, I’m not naming or decorating anything. I found a very obscure and odd bag online to potentially use in lieu of the fanny pack, we will see how that goes once it arrives. From Eastern Europe. Yep, it’ll be weird.

That’s really it for now. The latest long-awaited paracentesis (“parenthesis”) removed another 3+ liters of tumor fluid off my abdomen, offering about 8 pounds of relief for now.  Work and improv continue relatively unabated.

Tune time. I don’t know how I’ve had the blog this long without including David Gray, one of my favorite voices. His slower pace seems fitting to the holiday bustle and since we’re entering the holidays, how about a 2-for-1. The first song he ever wrote, which remains my favorite, along with a great Randy Newman cover. Next post in December, probably.

It’s been quite the week.

Thursday started with the new CT scans and ended with me on the phone with the doc learning that the chemo tag team of Gemzar and Cisplatin wasn’t working anymore. The cancer cells finally reproduced and mutated enough to outsmart them. Not the most surprising news in this medical game of chess, but still unsettling and scary. 20 doses over 17 months had helped beat back the Hipster, but now this line of chemo is SO last year.

So...now what? Options were spelled out, and for a second time, there was a clinical trial in the mix. And this time, it was back home in Seattle, taking two different types of oral chemo that have shown results for some cancers and trying them together. Talked to them about the study Friday, was sent 17 pages of homework to review over the weekend, then another, longer phone call on Monday. Oh, you think having cancer exempts you from homework? Think again. You can never hide from homework.

Tuesday was the big huddle at the clinic. We decided… nah. Good study, good people (and this is me saying this about the University of Washington, keep in mind), but it came down to time. It would be too many months in an early-stage trial to know if it was truly proving effective or not.

Instead, we’re opening a second line of chemo. New drug, new routine, new potential for all kinds of weird side effects. The drug is called FOLFIRI, originally developed for colorectal cancers, then migrating north over time for use with other GI cancers, like mine. And while it’s another kind of chemo, a lot will be different.

The biggest difference is the delivery system. Instead of three hours in an infusion lab twice every three weeks, I’ll spend half that much time in the chair once every two weeks. Then there’s the Fanny Pack. It’s being called a Fanny Pack, but you can guaran-damn-tee that I’ll have a different name for it once I get to know it. The device soon-to-be-formerly-known-as the Fanny Pack gets hooked up to the port in my chest and slow-drips drugs into me over two days. It will be interesting to see what this means for things like going out into the world and sleeping at night. The next update will focus a lot on this, for certain.

There is also no “usual” schedule for side effects this time. No days when you are more likely to feel nauseous or have GI issues than any other. A little randomness to spice things up. Again, odds are I lose my hair, but those were the odds last time, too. Hopefully, by the power of Steve Harrington, I’ll keep it again. If not, there will be photos. So many photos.

And that’s where things stand today. Monday is the day one of the chemo sequel, which will likely run for 5 cycles. Having a strategy is always comforting, especially after doing all the homework and having whatever possible confidence that it’s the best path to take next. See, homework does pay off. Stay in school, kids. Now we attack anew. The game is afoot.

Our song this time is just a great tune. Little-known band that will hopefully be known better soon. Girl with a great voice, song that will get you swaying. All we want sometimes… is a shot.

This is perhaps what many would like to ask me, but only the bravest of the brave would be able to. And so most of the news is shared to the grapevine. But here it is, straight from the source.

When people see me for the first time after hearing about my diagnosis, many are pleasantly surprised that I look relatively ‘normal’. Make up has done a fantastic job at hiding any other visible skin imperfections. I dress normally and do not exhibit signs of cachexia (weight loss). I am able to function within reasonable limits. Perhaps the only exception would be my hair (or lack of it) at some given point in time. But to the untrained eye, I look well and good, and will probably even be mistaken as ‘healed from cancer’.

But beneath the surface, what you don’t know is that it has been a long and arduous journey. One with many ups and downs, but with an abundance of love, faith, hope, laughter and positivity. 

To date, these are the main procedures and treatments that I have soldiered through:

Colonoscopy (the procedure which is what led to my diagnosis)

CT, PET scans and blood tests

Proctoscopy (another procedure in preparation for surgery)

Low Anterior Resection (surgery to remove the portion of my bowel where the cancer was located)

First-line chemotherapy - 12 rounds of FOLFOX

More CT, PET scans and blood tests

Percutaneous lung biopsy (a procedure where a needle is inserted into my lung to obtain tissue sample for a genetic test of the KRAS gene)

Port-a-cath implantation (minor surgery to implant a subclavian port-a-cath)

Second-line chemotherapy & targeted therapy - 12 rounds of FOLFIRI & Avastin

Third-line chemotherapy - Xeloda

Phase 3 Clinical Trial - Lonsurf (a relatively new oral chemotherapy drug)

Stereotactic Radiosurgery for brain lesions in my cerebellum and right temporal lobe

Whole brain radiation for 4 other sub-centimeter brain lesions

Radiation to the sacrum, sternum and lung.

I consider myself incredibly blessed to have been able to withstand such long treatment history, and still be in a position to further withstand more. It is incredibly rare for someone to be part of a tiny percentage of advanced colorectal cancer patients who have yet to kick the bucket in spite of the cancer having spread to my lung, liver, brain and bones (believe me, I’ve scoured many online patient forums).

Though the prognosis and general outlook may be grim, I still take pride in how far my faith and current medical advancements have brought me in terms of defying the odds and statistics.

A heads-up for those starting - or are scheduled to start - FOLFIRI for Pancreatic cancer. Covers both 5-FU and Irinotecan. Started today, so far so good, but was given atropine to counteract rapid-onset runny nose and watery eyes. Nurse explained that virtually everyone has these issues, and the pharmacy order had it included. Atropine has anti-diarrheal properties and is mentioned here as well. 

Folinic acid - a 5-formyl derivative of tetrahydrofolic acid which is readily converted to reduced folic acid derivatives, thus have vitamin activity equivalent to folic acid. It is used to reduce the toxic effects of other medications like methotrexate and pyrimethamine.