My Last Chemo Infusion Roundup

If all goes as planned, last week's chemo cycle will be the last of my chemo infusions. Going forward, I'll be on pills. And at this point, it's hard to see any circumstance that would lead me to choose to go back on the chemo infusions. 

This is particularly true after this last cycle which has been pretty horrible. Despite the four week break, the side effects this time were as bad as they've ever been. The nueropathy was particularly bad. At this point my feet still hurt -- which is new -- and while my fingers are getting better faster, the pain was the worst it's been so far. 

Oddly, Thursday and Friday weren't all that bad. For the first time in more than a month, I was able to work the two days after chemo. It wasn't until Saturday that I really started feel terrible, and Sunday was worse.

Overall, things are starting to improve, though I'm still drinking beverages without ice. It feels like things are starting to improve -- yesterday being better than today -- but given how long the effects have lasted this time, I'm glad to know that this will be my last round with IV chemo. 

I don't care how many months or years it buys you, the trade offs from chemo -- well, IV chemo at least; we'll see how the pills go -- just aren't worth it. 

A Multiple Choice Exam

So for most of today I've had a headache, fatigue, weird sinus stuff, stomach upset, and zero desire to eat. Is it:

A. Physiological side effects of the last round of chemotherapy?
B. Pyschosomatic side effects of the last round of chemotherapy?
C. Some seasonal bug I acquired by stupidly going to Target yesterday to buy toilet tissue, a blender, and the new Call of Duty game?
D. Some combination of the above?

Yeah, your guess is as good as mine. All I can say is that I'm really tired of feeling lousy for no specific, time-limited reason. I do hope the side effects of the Xeloda are fewer and less intrusive than the fluorouracil it's replacing. If they're not, I won't be staying on the pills for long.

Contemporary cancer treatment: keeping you alive so you can feel lousier for longer. 

Personally, I'm growing tired of feeling lousy.

Goodbye, Home Infusion Pump

You I will not miss. At all. 

An Open Letter to Oxaliplatin

Dear Oxaliplatin,

Today I realized our relationship is over. After six months of bi-weekly intimacies -- and how much more intimate can you get than the way you rushed through my chest port straight to my heart? -- you will soon just be a memory to me, and I will just be a statistic to you.

Like all relationships, ours had its ups and downs; and like many relationships, most of the ups came at the beginning and most of the ends appeared toward the end. I cannot deny that when I learned after Cycle 4 that you’d reduced the size of my tumors, my fondness for you grew. A shrinking tumor is a good tumor, and how can one not love the agent responsible for forcing their tumor to turn from evil to good?

But I’m sad to say that troubling signs had already begun, even while you were encouraging my tumors to behave. That thing you do to my mouth? That is not “sexy,” that is not “fun” -- it’s bloody annoying, and the fact that every time we got together it only got worse was probably the ultimate cause of our inevitable breakup. Frankly, I find this most recent round, and the way my lip now tingles and gets weird the minute it touches cold liquid, intolerable. I love ice, and I do not like drinking through a straw.

Similarly, I fear I may have misinterpreted the feelings you generated in my abdomen. Love is frequently described as a feeling of “butterflies in your stomach,” and for the past six months I’ve certainly been feeling something in my stomach. But after what I’ve seen, smelt and felt, I’ve determined that what’s in my stomach ain’t butterflies.

For these reasons, and all the scary things an ongoing relationship might cause, I've consulted with the experts and decided it’s time we go our separate ways.

I have no doubt that eventually some of those experts will try to persuade us to get back together. “You responded so well to Oxaliplatin,” they’ll tell me. “Oxaliplatin was so effective with your tumors.” All true, but also beside the point. There’s more to life than the size of your tumors -- at least qualitatively; quantitatively the size of your tumors may be pretty much dispositive -- and at risk of coming across as an alcoholic, the Happy Hour is a very important part of a happy life. Also crucial to a happy life is the ability to limit your abdomen feelings to one: hunger.

If we’re ever getting back together, Oxaliplatin, you’re going to have to figure out how to do your important work on the tumors without the annoying and life-diminishing (again, qualitatively) side effects. A life without iced beverages is just not something I’m interested in.

But regardless, I will always reflect fondly on your impact on my tumors.

I wish you all the best,

john

Family of Origin Interlude #3

Evidence would suggest that the males in my family suffer from a genetic disorder: the gene that causes someone to start a project is (overly) dominant, while the gene that causes them to complete a project once it's been started is basically non-existent. 

A couple of examples should easily illustrate the point.

Years ago my Mum asked Sib2 and I to install a fence around the perimeter of her property. So we bought all the posts, panels and concrete, rented a gas-powered post hole digger, and spent a weekend building Mum a fence -- mostly. We sunk and cemented all the posts, and nailed in all the panels. but we didn't go back to trim the posts to a consistent length above the panels. For years Sib2 listened to Mum complain that the posts were all sticking at random lengths above top of the fence, until he eventually went back to cut them all to length.

Then there was the kitchen in my first house. I had contractors come in and move some walls, rebuild the roof, run new power and so forth. They left me with an empty, drywalled box, and then I went in and installed the cabinets and appliances, laid tile, painted and installed trim -- well, most of the trim. I got the crown molding and window trim installed, but for some reason opted to punt on baseboards. For years the kitchen looked fabulous, as long as you didn't look at the bottom edge of the walls. I think it was about three years before I decided that I should probably install the baseboards in case I ever needed to sell the house.* 

Similar tales of 95% completed projects litter the ground of our family's history.

But while this problem can be managed when you've got untold years to wait for the impulse to complete the last 5% of a project to appear, when there's suddenly a far less generous clock on completion it becomes something of a problem.

For example, when I moved into my condo a year ago I painted the walls. Much of the trim, however, is still waiting for a refresh. What's worse, I've painted some of the trim so the unpainted sections are all the more obvious. And while I frankly don't really see it anymore, the last thing I want to do to whomever winds up managing my estate is leave them with a condo full of partially completed projects -- painting is far from the only half-completed thing I've started -- that all need to be completed before the condo can be lived in or sold. 

Clearly, I'm going to need to develop some new strategies for project completion. I think I'll start with my squares. 


* To be perfectly honest, I didn't install the very last piece of kitchen trim until the night before the house went on the market. 

Cycle 9, Day 1 Summary

Happily, the cancer vacation seems to have had an impact on my reaction to the chemo. With the last few cycles, I've been down for the count for nearly four days. Today, though, I've generally felt pretty good, and certainly nothing like the debilitating fatigue that came previously. 

That said, it's not been without it's impact. After nearly three weeks of cancer vacation, I've gotten used to drinking things stored in my refrigerator. Big mistake. I now have three-quarters full glasses of milk, eggnog and orange juice sitting on the shelf in the fridge. The neuropathy hit with a vengeance, and I'm again reduced to drinking warm beverages. Even just having something cold hit my lip starts it to tingle and go numb. I just wish I'd remember that before I stupidly try to drink something cold.

And then there's the chemo-induced gastrointestinal distress -- but again, some things are just not worth dwelling on.

We'll see if things change over the coming days, but so far this last cycle is shaping up as manageable. 

Happy Holidays!

I learned last year that holiday cards aren't really my thing. Making them amuses me, but I don't really have control of my address book such that I can find the twenty addresses necessary to make it a cost effective activity. I'm pretty sure I have more cards left over from last year than I actually sent.

But since everyone I'd send a card to is likely reading this blog, I thought I'd just post an image of what this year's card would've looked like here. 

Feel free to print out a hard copy if you like to hang them on your door or something.

The Cycle 9 Chemotherapy Liveblog, Take 2

Well let's try this again.

So I'm back in the infusion center for a second attempt at Cycle 9. Unfortunately, the four week vacation hasn't really made a difference in how I react to these cycles. The nurse hadn't even begun to draw blood for the required pre-chemo lab tests and I already felt lousy. 

How can saline make you feel lousy? It can't, but it does.

Ah well. The line's in and the blood's been drawn and now I'm just waiting for the (notoriously late) oncologist to get the results and let me know if we're good to go for another cycle, or if my test results will again send me home. And if that's the case, it'll be time to talk conversion to pills. Based on what the SCCA-guy said, going six or eight weeks without doing anything to the cancer is not a good choice.

But we'll see...

8:32 am
Checked in with the oncology clinic, waiting, and reading a reprint from a Ladies Home Journal article about hospice care. Only slightly terrifying...

8:39 am
Checked in. It seems the eggnog lattes are catching up with me. Back to 224 pounds. At least no one can accuse me of wasting away. Back to waiting, this time for the doc to arrive.

8:44 am
While we're waiting for the doc, I thought I'd re-post the new Star Wars trailer released this past weekend, since there's nothing like a new Star Wars movie to convince an American male born in the sixties that they need to try to stay alive at least until the movie is released. And for the record, not a fan of the new light saber...

8:48 am
Back to waiting...

9:27 am
Big good news: This will be my last chemotherapy infusion. Next time, they'll move me onto the pill version of the one chemo drug and drop the other. I'll still get an infusion of Avastin (assuming my urine protein isn't out of whack), but that only takes a half an hour and will only be every third week. 

Big bad news: At risk of being blunt, they still figure I'm basically dying. It seems the challenge with chemo, like so many things, is that the effects basically follow a curve defined by the equation f(x) = 1/x or, for those of you that have a hard time visualizing a curve based on it's defining equation (like me, as I had to look all this up), this:

The general consensus of my various oncologists is that I'm probably out somewhere near the 4 or 5 on that graph above, and so the impact of the chemo drugs I'm currently on is waning. So whether I go one or two more is more or less irrelevant. 

The bigger problem is that they'll move me on to the pill version and, in all likelihood, it'll have a significant impact to start, and then slowly fade. As today's oncologist put it, "eventually you'll have to decide what to do." 

My reading is that "decide what to do" is a euphemism for "go back on chemo or die" (or possibly just "die").

Of course, based on a sample of one, I suppose it's possible that my cancer will continue to respond to the pills and eventually I'll be determined to be cancer-free. Hope springs eternal.

Other bad news: Xeloda, the pill form of the 5-FU cancer drug, is not without its side effects. Most significantly, sores; both the weird mouth sores I've previously warned you not to Google, but also a weird rash that can turn into blisters and then broken blisters that breaks out on the palms of your hands and the soles of your feet.

So you give up tingling, painful fingers and toes, and instead get open sores on your palms and feet. Interesting trade off. If it weren't for the fact that I'm also giving up the 46 hour infusion (which I hate), I'm not sure I'd make the trade. But I gotta get off the infusion pump.

That's next time, though. For now, it's the standard infusion of Avastin, the chemo drug with the long complicated name I can't remember, and then the 46 hour infusion of 5-FU. But at least it'll be the last time -- at least for now. Hard to see choosing "go back on chemo" when it comes time to "decide what to do," but stranger things have happened. 

9:59 am

Waiting on the drugs to be delivered so the infusion can start. 

10:09 am
With nothing better to do, I looked up the side effects of Xeloda. Here's the list of common sided effects I found: low blood cell count, fatigue, diarrhea, hand-foot syndrome (this is the weird rash/sore thing described above), nausea, vomiting, dermatitis, and elevated liver enzymes. 

The less common side effects included: poor appetite, abdominal pain, low white blood cell count, low platelet count, mouth sores, neuropathy, swelling of the feet and ankles, fever, constipation, eye irritation, shortness of breath, headache, muscle or bone pain, dizziness, insomnia, dehydration, cough, blood clots, excessive sleepiness, confusion, seizures, loss of balance, nail changes, darkening of the skin, taste changes.

And now I'm a lot less optimistic about Xeloda. 

Back to waiting and looking at YouTube videos. No more Xeloda research. 

10:19 am 
Waiting...

10:22 am
Speaking of Star Wars, there is the very reasonable question of why, given the experience of the three prequels, anyone would have any interest in "Episode VII." The obvious answer is, George Lucas is no longer directing (if he's involved at all). By way of illustration, since nothing popular posted to YouTude can exist for long without a parody version appearing, here's the "George Lucas version" of the Episode VII teaser. 

10:29 am
The drugs have arrived. 

10:45 am
I was going to have an update -- and even wrote a paragraph -- but I changed my mind. But I'm not sure how to abandon that process once it's started without potentially losing the entire post. So this is a non-update update to keep the software happy.

The Avastin continues to flow.

11:10 am
The Avastin is done, so were on to the oxaliplatin. Two hours and counting.

11:57 am
I obviously used the last 45 minutes of infusion time to create my holiday card. (Enjoy!) The drugs are still dripping. Not much else to report at this time. 

1:13 pm
And that's it. The infusion is done so now they just have to hook me up to the portable pump -- for the last time (yay!) -- and I'm out the door. Easier to do all that without a computer on my lap, so I'm calling what should be the last of my liveblogs done. 

May the force be with you...

It Sounds Good in Theory -- Actually, No, It Doesn't

Although I probably shouldn't be -- we're talking billions of messages -- I'm frequently surprised by the coincidences the Internet throws up. Today's example: well-meaning, but ultimately creepy, communications from beyond the grave. 

Although I just learned of it today, since 2006 there's apparently been a company called Deathswitch which allows the users to schedule email messages to be sent after they die. The system sends you an email message on a sporadic basis, and as long as you reply it knows you're alive. Once you stop responding it figures you're dead, and starts the countdown to sending whatever messages you scheduled to be sent after you were gone.

Good in theory, I suppose, maybe, but then there was the Dear Prudence column in Slate which had a woman writing in looking for permission to stop reading the letters her mother had written as she (the mother) was dying a decade earlier. Mom had apparently written a letter to mark all the expected big events in her daughter's life -- birthdays, graduations, weddings, etc. -- and the woman was tired of having to focus on dead mom during all her big events. 

I can totally get her point, but imagine how much worse it would be if Mom had scheduled a bunch of emails rather than leaving a stack of letters. Out of the blue, this message from a dead person appears in your inbox. Granted, I'm not the most sentimental person in the world, but personally I don't think I'd find an email from some dead someone sweet or comforting or "sensational," to use the term the author uses to describe messages from the grave potentially containing "unexpected declarations of love, confessions of secrets or crimes, or the location of buried cash.

But who wants an "unexpected declaration of love" from some dead person? What good is that? If you love someone, tell them while you're alive so you both have the option to do something about it. "I always loved you, but now I'm dead" seems about as pointless -- if not aggravating -- a message as one could possibly receive. 

And "confessions of secrets or crimes?" Really? What are you supposed to do with a "Dear Son, I just wanted to let you know... I was a Nazi... I embezzled funds from my employer... I killed the neighbor's dog... Etc." message? If you kept your crime a secret while you were alive, why share it with people after you're gone? If you weren't willing to pay the cost of your crime by confessing while you were alive, why make your descendants pay for it by confessing it after you're gone? This isn't sensational, it's stupid (and potentially cruel).

Though not as stupid as the idea that someone's going to set up a message to be delivered after they die disclosing the location where they buried their cash. Yeah, that'll happen.

Regardless, none of this sounds "sensational" to me. Frankly, it sounds horrific. So rest assured world, when I'm gone you won't have to worry about me sending you emails (or letters) from beyond the grave. And if anyone out there is setting up their Deathswitch account, unless you're planning to tell me where you buried the cash, please feel free to leave me off your recipient list. 

If I need to hear from you after you're gone, I'll pull out a Ouija board. 

So Ends the Cancer Vacation

Vacation's over, I'm afraid. If all goes as planned, Wednesday will have me back on the chemo cycles -- but even if it doesn't go as planned, the psychosomatic symptoms have already started back up so cancer and chemo are back to being part of the daily reality.

Ah well, it was fun while it lasted. And I've still got one more day to enjoy iced beverages. 

And we'll see what Wednesday brings on Wednesday...