Cycles, rounds, etc…

It occurred to me that I throw around these terms, but I’ve never taken time to really explain them in an organized way.  I made a little chart that will hopefully show you how all this plays out over the weeks and months.

cycle chart copy

I refer to the whole process as a “round” of chemo, which includes four (sometimes six) cycles.  Day one of each cycle is when I get the actual infusions (“chemo day”).  The CT scan happens the day before, so they can see where things are at and have a reference point for later comparison.  Later scans show what’s happening with the tumors, and help them determine how many cycles are called for.  The final scan is sort of the report card at the end of the semester, if you will.

 

Anyway, I hope this clears up any confusion about how this process plays out.

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Cycle Three, day two.

Had my third cycle of chemo yesterday.

Met with Dr. Leal to go over blood work numbers and my CT scan results from Tuesday. My blood work numbers were generally OK, with a few somewhat-below good but acceptable results, so she OK’ed this cycle. I lost a little bit more weight which concerned her (and me) but the upshot is: EAT MORE FOOD. That will be my mission, and a fun mission at that! It’s kinda nice to have essentially carte-blanche from my doc to stuff myself with high-calorie, high-value food whenever I want.

The CT scan showed no appreciable shrinkage of my tumors, and no appreciable growth of same. This also concerned her, as she was hoping for a bigger bang out of this round than has been seen so far. The type of cancer I have is usually more responsive to chemo, but for whatever reason, mine is a stubborn little bastard. On that basis, she will stop me at the 4th cycle with another final followup scan. I had to process this for awhile, but my attitude remains the same: I count it as a good that there has been no growth of my tumors. And based on how I feel day-to-day, I still believe all this treatment has been very worthwhile, and has benefitted me immensely. I have seen a number of unpleasant symptoms almost completely disappear, and I am able to lead an almost completely normal life, with very few and very limited concessions to this disease.

I know it’s her duty to bring up planning for the future with an eye toward dealing with the consequences of progression of this disease, and I told her I hear that, and am seriously contemplating it, which is my only responsible course of action. Remember, the care I am getting is not aimed at a cure, but at life-extension and quality-of-life maintenance. This is the heart of my reality. But, nothing is written in stone, and I still aim to live every day completely, and to keep my focus on doing that.

I spoke for quite awhile with the Palliative Care doc, Karen. She was absolutely great to talk to, very much a straight-shooter, and really helped my to refocus my thoughts about the future and what Jeanette and I might expect to have to deal with in the event I become too sick to care for her. I realized we are so very lucky to have a virtual army of loving friends and family who have been so very generous in offering their time and talents in that capacity already. So far, I have been well enough not to need that kind of help, although, believe me, I feel honored to have so many of you-all offer it to us! Karen was very glad to hear that, and encouraged us to think along the lines of how best to avail ourselves of that help when the time comes that we need it, the goal being to stay in our house as long as possible.

Then there is the issue of, do I want to be considered “full-code” – full resuscitation – or otherwise, and how I would want a red-lights type medical crisis like that to be handled. I told her that this prospect is so abstract and far-off because I feel so good and normal now, that it’s hard to think about it in any useful way. She said, yes, of course it is, but that now is the time to think about it and make rational decisions, rather than wait for the sirens to blare and make such decisions in haste and under the worst-possible circumstances. Or, worse, to dump them on Jeanette or my family.  Indeed. I suppose, all of us getting older, it’s something to consider. It’s just a bit more, er, present for me now.

The chemo treatment itself was surprisingly quick, as I had hoped, and the staff were all great, as usual. I have to say, I have been extremely pleased with everyone I have dealt with at UW Health and especially at the Carbone Center. We are lucky to have this place and these people here in Madison.

This is some of the stuff they infuse me with,  I like the big, loud orange warning stickers.  Rather impressive, yes?

This is some of the stuff they infuse me with. I like the big, loud orange warning stickers. Rather impressive, yes?  Not shown: the full-on protective garb the nurses wear as they administer it.  The red substance in the syringes is the “A” in my CAV regimen, Adriamycin. It comes out that color as well.

This is the highly=advanced remedy for the side effect of mouth irritation caused by the red stuff in the syringe.  To be utilized during injection.

This is the highly-advanced remedy for the side effect of mouth irritation caused by the Adriamycin. Administered orally during injection.

My big reward for being there all day was to play a super-fun Steely Dane gig afterward, down in beautiful Lake Geneva, WI. If you aren’t aware, Steely Dane is a rotating collective of Madison musician all-stars (which for some odd reason seems to include yours-truly) and we had a private, corporate party gig that night. So it was out the door ASAP, into the cold, cold car and off an hour and a half south to Lake Geneva.

One of the nicer side benefits of this type of gig is that the band is usually fed before hitting the stage. I was treated to a mighty fine steak with a topping of crunchies and sauteed mushrooms and a tasty demiglasse, lovely asparagus and mashed potatoes on the side, a nice salad, some kind of wrapped chicken appetizer, and a dessert of puff pastry filled with molten chocolate. I ate every last tidbit. Body FED.

The gig was super-fun, as always, and I was home by 12:30. Didn’t sleep too well, and had some stomach issues due to the vast amount of nasty medicines flowing inside me, but that is an unfortunate but expected side effect in the immediate aftermath. I napped a bit today, and am on a special anti-nausea med with the weird side effect of causing hiccups. HIC. Well, I only take it through Saturday, so I will put up with it as best I can. HIC.

I am happy to say that I have somewhat mastered that taste/smell effect of the chemo, in that, when I have a bout of it now, I simply eat right through it, not letting it ruin the joy of food for me as it sort of did last summer. Hot sauce helps quite a bit, hence my late obsession with tacos!  However, I am less-than-happy to report a new and rather annoying side-effect: a persistent nasal drip.  It’s like having a runny nose all the time, and has led to some rather embarrassing moments in the last week or so, not to mention a rubbed-raw nose from constant wiping.  Vasoline is a great remedy for this irritation.  I assume this will persist until after my current course is completed, so if you see me with a kleenex in hand, you’ll know why.

I will be travelling again to the hospital next week for more immune-boosting shots to ward off neutropenia, because of the vagaries of insurance. I can’t believe that two CTs and an MRI, not to mention all my time with docs and the chemo clinic, haven’t put me WAY over the out-of-pocket cutoff yet. ‘Tis a mystery.

That’s about all for now. Will post with anything relevant or amusing as it occurs. Will I be lucky enough to see the Return of Cooter? Who knows?!

Stay tuned!…

Yet another story from the waiting room of the Carbone Cancer Center.

Went in for my first-of-seven shots today. Sitting, waiting to be called in, when I notice another old coot from Up Nort sitting a few chairs away, talking with a woman who may or may not have known him, or just been making conversation.

I’ll call him “Vern”.

A doc who seems familiar with Vern greets him. Vern volunteers that he allowed an extra 45 minutes to drive down today (in light of yesterday’s storm), and yet he was still 10 minutes late. The doc asks him how long it takes him to get to the clinic and he says, “it depends.” Well, doesn’t it always? “On what?” “On traffic.” “Oh.”

After a bit, Vern turns back to his friend and begins to bemoan the state of the world.

“People sure are changing,” he observes. “I let people come in to my garage (apparently he is a mechanic) and I work on their cars and they say they’ll come back and pay me. I did $300 worth of work for this one guy, and he hasn’t been in to pay me yet. I lent $300 to this one lady, and she’s only paid me $200 so far.”

“Oh, she’ll probably pay you the rest soon.” his friend responds. “I dunno about that,” says Vern, “I lent $700 to this other guy and I haven’t seen him in weeks. Plus, I keep my guns there, and people just come in and walk off with them while I’m working.”

I did NOT see that one coming.

“Can you believe that? I do all this work for these people and lend them money, and they just take my guns while I’m working on cars. Why would they think that’s OK?”

Well, I tried and I tried, and I wracked my brain, but I just could NOT think of how one might prevent people from walking off with one’s guns while one’s working. Perhaps there’s some kind of container, something that might prevent people from opening it and taking one’s guns? A man can dream.

So I was sitting there, imagining a stolen-gun crime spree about to happen in some podunk village in Northern Wisconsin, unwittingly driven by the kindly old mechanic who doesn’t know about door locks, when the nurse finally came out and called my name. I don’t think I’ve ever leapt out of my seat to head back as quickly as I did just then.

Six more days to go – what will I see, what will I learn, in that time? The mind reels.

Fun-fact about our medical insurance system.

Remember those immune-boosting shots I had to have post-chemo last summer? Gotta do ’em again, but no biggie. It’s just that, if I take them home and do them myself, as I did last summer, they’d cost me $2245 out-of-pocket. Yep. If I drive in to the clinic over the next seven days to have a nurse administer them, they are covered. Guess what I’m doing this week?

How does this make sense to anyone? Well, maybe I can see Cooter again, if I’m lucky.

Cycle Two completed (with another story!)

Went in today (Wednesday) for the second treatment.  Had a minor bout last week of that ol’ devil, neutropenia, but it didn’t go anywhere, thankfully.  As a result, they are giving me the 7-day preventative shot routine again to boost my white blood cells.  No mention of antibiotics (which is fine cuz they ripped my guts last time) but the year is young!  Treatment went fine, albeit everything was delayed as usual.  They are always so busy in there.  Where are all these cancer cases coming from?  Anyway, it’s only one day every three weeks this time, as opposed to last summer with three-days-in-a-row every three weeks.  An improvement.

Jea and I were seated in a tiny treatment bay, lined only with curtains.  We were then treated to yet another fascinating floor show.  This round is certainly proving to be chock-full of entertainment, in contrast to last summer’s notable lack of festivities.  The star of the show this time was a guest of the Wisconsin Department of Corrections.  He was an older dood, in his 70s, and quite chatty.  I’ll call him Cooter the Jailbird.  Thick shock of silver hair that also crept down his cheeks and throat like untrimmed vines.  A bit of a slur to his speech, on top of a heavy stutter.  But he was obviously having a Big Day Out, and was enjoying the hell out of it.  His minder, a correctional officer, sat nearby reading the local news-rag and barely registering Cooter’s running commentary on this-and-that.  Minder would occasionally look up and offer a few words in response, mostly designed to discharge his obligation to prove he wasn’t asleep.  Cooter would carry on without missing a beat.

Cooter spent the first hour or so talking small-town Wisconsin-ania with whatever nurse or neighboring patient he could get to respond.  This portion of the program I largely ignored, aside from wishing he would can it for a few minutes.  He then segued into a very long and thorough discourse on olde-tyme kountry stars and their music, rattling off a long list of the drunk and famous, their lives and loves, and what handful of tunes they were known for.  All the greats were represented: Johnny and June Carter Cash, Hank Williams Sr., Patsy Cline, Waylon, Willie, George Jones, Tammy Wynette, and on and on.  He knew all the page-one gossip about their travails and tragedies, and waxed eloquent about their music, essentially repeating variations of “they don’t write ’em like that no more”.  This I found rather engaging, being a bit of a music buff myself, and to my surprise I found I kinda started to like the guy.  At one point, Jea and I had a fit of loopy afternoon-slump giggles, inspired by his warbly-yet-oddly-tuneful renditions of this or that hit song.  All in all, a good time!

The fun was not to last, though.  After a good almost-two hours of this, he changed suddenly to the subject of how he had literally thrown his life away, and how he was such a disappointment to his family, and if he could go back oh, how much he would do differently, and so forth.  It sounded like happy hour at the local VFW hall, and he seemed almost to be writing his own country song.  Must have been all the Johnny Cash on his brain.  Happily, he moved past this dark third act and entered the world of delightful chattiness again.  And then, after several LOUDLY narrated trips to the head, he was gone.  And the decibel level in the clinic dropped by half.  And, in case you aren’t totally clear on the point, I will reiterate that he started yakking the second they rolled him in, and he NEVER STOPPED, right up until they rolled him out again several hours later.  How does the man do it?!

I cannot imagine what will be on offer for the third cycle!  Until then, peace, I’m outie 5000!

Funny thought…

I’m so used to seeing the military metaphor used when folks talk about cancer (you know, as a Battle). Mostly these days, I feel more like there’s an annoying, slobbery dog wanting to jump in my lap and I keep pushing it back down on the floor. Is that weird?

Back to chemo, pt. 1

So I started back at chemo today. It went pretty well. First, let me get the details out of the way, and then, let me tell you the rest… of the story.

 

I had an EKG and a head-MRI yesterday in preparation for today. Both scans came out clean. That is especially good news about the MRI, as it means there is no detectable cancer in my noggin. I should add that they have a doppler function for the EKG which is super-cool and psychedelic-looking.  So watch one if you get the chance – you’ll see your heart beating in real time, with a light-show!  My blood-work all looked good, so Dr. Leal gave me the go-ahead to start my treatment today as scheduled. I’m on a new course of three chemo meds called “CAV,” which stands for Cytoxan, Adriamycin, Vincristine. This is another regimen from the past, but Leal seemed pretty confident in its efficacy. One of them (I forget which) can be hard on the heart, hence the EKG. But Leal says I’m young and healthy enough that I should tolerate it just fine, which I seem to have done. I confess I do enjoy hearing how young and healthy I am.

 

All the usual side-effects will be, er, in effect, but I have anti-nausea drugs to help with that, and I have already buzzed my hair in anticipation of losing it again. A big plus to this regimen is that it is administered all in one day, rather than the three-day course I had last summer. It was a long-ish day today but I don’t have to go back for three more weeks, which is sooper. I also will not need to give myself those Neupogen shots either, barring a recurrence of infection. My weight has been stable for several months now, which is a great sign of improved health. And I still feel pretty good, despite the increase of a few rather unpleasant symptoms I have been dealing with for the last month or so. With luck, the CAV will tamp down my new growths and generally put the kibosh on those symptoms.

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Well, I told you I would give you a story and here it is.

 

DRAMA IN THE WAITING ROOM!

There was drama in the waiting room! Jeanette and I were sitting quietly and this trio of folks sat down across the table from us: a middle-aged couple and another guy who turned out to be her brother, who was there for his very first round of chemo on account of his lung cancer (remember, Wednesday is lung cancer day at the clinic). He was very blue-collar looking, very Wisconsin, and had a bit of an underbite as well. She was talking to him such that I heard about half their conversation without trying. He was describing how he works in some kind of industry that uses a lot of “chemicals” and he was the only one who never said “no” to management’s requests that he clean this or wash that. They apparently give him all the dirty jobs no one else wants to do. He was really harping on those chemicals! Well, Dirty Harry was going on and on about it, and I started to lose interest.

 

That is, until he got upset, stood up, and threatened to leave before his treatment. From what I heard, the doctors keep trying to get him to quit smoking, but he just *knows* that the chemicals gave him cancer. He wants his sister to lay off about the cigarettes but she won’t (duh). And he’s just sick of it and is ready to just storm out of the clinic and never return. Bad move, dude. So off he stomps, sis right behind him, and we are left in awkward silence with his (I assume) brother-in-law. B-I-L looks like he needs to get it off his chest, so I gently say something like “cancer is tough on everyone.” And OUT IT ALL COMES. We talk with the guy for a few minutes, which hopefully helped him to feel like he’s not the only reasonable person in that situation, and then sis returns with the social worker who is advising them. They proceed to hash it out some more, and then the nurse comes out and calls my name. So we wish them all luck and go in.

 

A HEARTFELT MOMENT WITH MY DOCTOR!

Every time we meet with Dr. Leal, it seems we need a day to recover. She usually has the unpleasant duty to tell us what new growth she is seeing, or what terrible side-effects to expect, or what disease progression we need to be mindful of. I don’t envy her this task. Today, however, was an unusually good day for all of us. As I said before, all my scans came back clean, which was a real mood-lifter! She cleared me for my treatment, which was good forward motion.

 

I tried to describe my current symptoms to her in as detailed a manner as I could manage (which is rather like telling someone “it smells like purple!  It sounds like fishsticks!  I swear I’m not crazy!) She listened patiently. Finally, unable to draw any meaningful conclusions from my admittedly highly subjective description, she could only conclude that, in her words, “cancer sucks.” Which I took to mean that, as I also believe, there are as many cancers as there are cancer patients, and there’s really no way to tell what all these niggling little symptoms mean, if anything, and that, ultimately, the chemo will hopefully do the trick.

 

I agreed that, yes, it does suck.  But I added that she is helping me a lot, and I thanked her for that. And she gave me a look that said a lot about what the rewards of being a healer are. I was grateful to have the opportunity to tell her, human to human, how much I appreciate what she has been able to do for me. And I hope that hearing that made her day a bit better too.

 

EPILOGUE!

Anyway, the treatment went pretty easily, and we left at around 4:00. On the way out we saw the sister from earlier, and concluded that they had managed to talk Dirty Harry into staying and getting his chemo after all. Good move, dude. Stick with it – it’s your friend.

 

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That’s it for now. I probably won’t have too much to report for a few weeks, but I will type at you then.