The Peaks and Valleys of the Cancer Cycle (OFT & 8/12 done)

(a long update)

I haven't posted in a while, again, but that isn't because I have nothing to report, rather that I've been quite busy.   Work has been busy, and I had another pretty long "One Fun Thing."

Two close friends of Sarah and I (Ben and Marv) had decided to come out and visit.  At first it was supposed to be a surprise for me, set up by the three of them, but the actual planning of that was difficult and I was eventually let in on the secret.   These were two friends from Pharmacy school whom we've known, well, since we started that over 10 years ago.  

The plan was that they were flying in Friday afternoon.  I had an Infectious Diseases conference that morning, so I got up early, went to that, and left in the early afternoon to the airport.  It was already snowing that morning, but they had no issues with their flight.  However, when trying to decide what to do for lunch, I had hoped to hit Boulder Beer's "The Pub."  Sarah had spent a half day working at her clinic up in Boulder and suggested that HWY 93 was getting uglier.  So, with the prospect of the entire Metro Denver area being covered in snow, we decided it best to stay nearby and ended up getting a delicious lunch at the Old Capitol Grill, which is a favorite of ours.   After that, we walked over to Coors for a "short tour." No touristy trip to downtown Golden is complete without a trip up to the observation deck on Lookout Mountain and we got a few pictures up there.

When we got back, Ben, Marv, and I decided we would play a little Wii.  Ben was insightful enough to bring extra controllers, and so we spent some time with Sports Resort.  Time slipped away fast and we missed dinner, but not the opportunity to get a late night snack at Q-doba just before closing.   After that was more Wii into the wee hours of the morning.

Saturday we took the Lucy to doggy-day-care, and then did some walking on 16th street mall before stopping for a snack at the Rocky Mountain Chocolate Factory and lunch at Rock Bottom Brewery.  In the afternoon, we decided to bowl at the Golden Bowl.   This was a good time, and of course I lost overall.  I'd say it is because I could not find a ball appropriate to my fingers, but a good craftsman never blames his tools.   Ben, Marv, and I spent the late afternoon throwing the football around while Sarah picked up Lucy.  I even got in a few punts, which turned out well considering what a bad idea that could be in a neighborhood.   After that, we decided on a pizza dinner at Tony Rigatoni's.  It was great fun to relax and re-tell stories from school.  We also talked about the NFL draft, the Brewers, our favorite power tools, our home projects, they told us all about their kids, Ben shared some insights on army weaponry and his recipe for pork, and we basically told stories that only those people who share a profession can appreciate.  Ben and Marv fueled up on coffee, and I had two Cokes which would allow for another late night of Wii Sports Resort, Punch-Out, and Mario Kart.  

Sunday morning came early and we decided to hike a local mountain behind our neighborhood with the dogs.  This was great, and pretty good exercise too.  After that, we had a quick breakfast before heading off to the airport for their early afternoon flight.  All in all, this was one of the most fun weekends I've had in a long time.  I really miss those guys, and I hope to get up to Wisconsin to see them both again this fall.

I had planned on possibly getting a quick bike ride in that afternoon, but I was pretty wiped.  This was just as well considering it did rain on and off all afternoon, so instead I took a nice nap.  I was actually quite shocked I was able to stay up as late into the morning as I was playing video games.  The three of us hadn't done that since, well, college.   So, I slept a bunch on Sunday afternoon, then Sarah and I watched some TV, and then I went to bed early for "Chemo Monday."

"Chemo Monday" started fairly early for us.  We dropped Lucy off at doggy-day-care, again, and then got to the infusion center at quarter to 10am.  Our appt was at 11am, but they need an hour to draw blood, etc. Due to the clotting issues I had last time, not to mention my arm debacle, we wanted to do the blood through the port.

And of course, the port was clotted again.  This was probably one of the most frustrating moments in my cancer treatment to date.  I'm not sure why, but this was one where I was really holding back the tears of frustration.  I haven't had many moments like this to date, and I was especially surprised by it after such a perfect weekend.  It wasn't so much the clotting that bothered me, but what this means is that first Cath-flo has to be ordered.  (20 minutes?) Then it needs to be given and you must wait for it (30 minutes).  If it is still clotted, and in my case it was, you need to wait another 30 minutes.  Finally and miraculously, my blood could be drawn, thus avoiding ANOTHER dose (and 60-90 more minutes).  This is just the start, because even a "stat" lab takes about an hour before you can be signed off on getting your chemo.   So, with that, we've easily added another couple of hours to the day, and the only thing that makes the day worse is making it longer.  

Why is that?  It isn't the time waste, I can easily deal with that.  It is the smells of the place.  By now I have an hyper-acute sense of smell, ESPECIALLY in the cancer center, and so that, combined with the fact that I can never get my temperature regulated appropriately in the chemo chair, had me very frustrated.   As always, I brought a bunch of books, magazines, and videos, and didn't hardly touch any of them.  Once again, I basically laid back and tried to sleep my way out of the day.

It was lunch time before chemo could even get started, and so Sarah asked what I wanted.  All I wanted was a diet coke and a "fruit and walnut" salad from McDonald's.   As many of you know, McDonald's is one of my favorite places in the world.  I don't know why, always has been, but I love absolutely everything about it.  Still, with the way I've been losing tastes for varoius food, I've been VERY careful around McD's.  Still, fruit, walnuts and yogurt seemed safe.

Finally, the chemo was started.  I did spend a little time reading a book, but not for the complete duration of the chemo.  We finally left just after 5pm, ending another long day at the infusion center.  We picked up Lucy, and I had Sarah pick me up yet another Fruit and Walnut salad for dinner.  I actually had some chicken sandwich and some ice cream too.

When I got home, I was in my usual chemo stupor.  So, I crashed on the futon in the basement to watch some TV.  I fell asleep during the Brewer game, and decided to go to bed around 8pm.   I should have just slept on the futon with the game on.   I couldn't hardly sleep all last night despite "chemical help."  I suppose it may be due to my naps on Sunday, and then a very full night of sleep on Sunday night, and then several naps at chemo.  In either case, today is the typical Tuesday after.  I'm in the chemo fog, I'm dizzy, I'm already behind on my fluid intake orders per cancer RNs, and want nothing but to lay around today.   By this afternoon I should be a little back to normal.  If my grammar or spelling is incorrect, I blame the treatment.

I should also update on my arm.   My vein is still rock hard and hot.  The pain of the arm itself has subsided tremendously.  It is still there, but nothing like it was.  What I now have are some weird back-of-the-hand cramps.  It is odd enough I cannot accurately describe it.   I also had a little cramp in my hand playing Mario Kart, but I do not think due to gaming, since you basically very loosely hold the steering wheel controller.  Possibly some electrolyte thing, but the oncologist suggested the hand neuropathies were due to Velban and would eventually get better.

So, to really quickly summarize this long post, I had a great weekend with some old friends.  My arm is much better.  Then I had a pretty frustrating and painful chemotherapy day, but, I'm now done with 8 of my 12 sessions.   Who's counting?

The excitement that is my left arm.

I haven't posted in over a week.  The reason is that I'm really not enjoying typing these days.


So, I had chemo last Monday.  As I noted, I had a little bit of a port clot.  Things would only flow "in" and not "out."  As such, they didn't want to give the chemo through it until it was running.  Since the only chemo I really needed to get through the port was the DTIC, I figured what would be the harm in getting the pre-meds and a few other chemo drugs through the peripheral line?


Now I know.  (And knowing is half the battle).  Starting last Tuesday and peaking some time today, my arm revolted.  It started in my elbow, which is where the peripheral line was started.  It got red and hot, and my vein now feels like a guitar string.  Actually, more like a bass guitar string.  After that, the pain progressed up the inside of my upper arm, and down the underside of my forearm.  My left hand tingles and sometimes twitches.   I had to visit the cancer center three times in this time.


Yesterday, I saw my oncologist and the head nurse there.   There is really nothing to be done about this, it is a very bad phlebitis and I'm told it is going to hurt "for a while."  (No clot.)  It will eventually go away, but it won't be soon.   I feel like probably some point this afternoon was probably the worst of it.   It isn't an excruciating pain, but it is absolutely constant and unrelenting.   As such, it is fairly distracting, and so I cannot concentrate on, well, anything appropriately.


I was told to ice it, and I was also told to take ibuprofen and Percocet.  The ibuprofen was a new suggestion yesterday, and I thought the reason this was off-limits to chemo patients is because of the irritation to an already irritated GI tract.  As it turns out, that is part of the concern, but the other part is platelets.  Since mine have been fine the whole time, I was cleared.   So, with that, last night I took 3 Percocet, 3 ibuprofen (200mg), and 2 tylenols.   I honestly didn't notice any improvement with this.  I'm not convinced the ice does much either, except maybe numbs things slightly.  The one thing that seemed to help was Ambien, since you don't feel pain when sleeping.  As such, I'm likely to go to bed soon tonight.


I do hate to complain, I realize it helps nothing, but, that's why I'm not enjoying typing.  Although this has been constantly on my mind for a week, in the scheme of "bad cancer things" this is cake.  It isn't dangerous.  It isn't even as bothersome as the mucositis I had early on, since that can lead to dangerous things.  It isn't as gross as the nausea or chemical taste that is so often in my mouth.  I still wish it would go away though.

Chemo 7 of 12 (Beginning 4th cycle)

Yesterday was a long day.  It was my 7th of 12 chemotherapy sessions.  We dropped off Lucy at doggie day care.   Next, I wanted to get there early for a blood draw.  Probably I should have had it done in the cancer center, and I'll get to why more, but one reason is that I was unimpressed with the rookie's sterile technique.


I was scheduled for a nurse practitioner visit.   I have a physician or NP visit every other session.  Honestly, I'm not sure why we had to see her, I had absolutely no questions, myself.  Neither did Sarah, really.   This was a new NP for us.  One thing she noted was no breath sounds in my left lower lobe.  That was interesting, especially coupled with my low (for me) pulseox.  I was at 96%, which is very normal for Colorado, but lower than normal for me.   My oncologist had never previously noted this.  So, she ordered a chest x-ray and downstairs I immediately went.   While waiting for the results of that, I went up to start my infusions.  Sarah had asked if this lung thing could be the bleomycin, but the NP assured us that this was not how bleomycin toxicity manifests.


My ANC was 500.  This was higher than usual for me.  


Another snag was hit when my port appeared to be somewhat clotted.  The nurse asked if they locked it with heparin last time, but of course I couldn't recall.   So, she tried a few tricks to get it to "backflow."  None of the simple things worked, so she ordered up some Cathflo.  That still didn't work perfectly, so she started a peripheral IV for the pre-meds.  Unfortunately, this was actually a little painful since she hit the spot the phlebotomist had hit earlier.   By the time she finished that, the Cathflo had still not gotten the port fully flowing both ways.  "In" was easy, but "out" was not.


It was hard not to be a little frustrated at this point between the breath sounds and the port and the lengthening day.  The nurse asked if I'd like to start my chemo through the peripheral line while she gave me another dose of Cathflo.  I had agreed both were good ideas.  The only medication I did NOT want peripherally was the DTIC.  


It was already turning out to be a long day.  Chemotherapy day is always unpleasant, and an easy way to make it worse is to make it longer.  I tried to eat a big breakfast (3 instant oatmeal packets!) but eventually got hungry.  Being hungry during chemo is slightly worse than eating in chemo.  Sarah got me a Chicken Caesar Salad wrap and a coke, but I could only have a some of each.  Sleep = no nausea + no funky smells.  (It is amazing how chemo or cancer sharpens your sense of smell).


Finally, the Cathflo worked and just in time for the DTIC.   By this time I was in my total "Chemo stun and fog" phase.   I slept through most of this last infusion.  Actually, I slept a bunch yesterday.  We had packed two movies to watch, but never touched them, despite my best intentions to.  I really think sleeping through chemo is a decent way to take it.  So, I don't even fight that anymore.


We finally finished around 4pm.  This was a long day, since we started before 10am.   I got home and took a nap.   After two hours, I woke up for a ice cream popsicle and some cheese and some milk.   Then, of course, I couldn't get back to sleep until about midnight.


Today, I woke up in my usual post chemo fog.  It is difficult to describe.  It is really like being kicked or stunned or something.  No pain, just an odd partial disorientation.  My brain just works a little more slowly, and I'm a little more tired and dizzy.  I usually watch some TV or something.  Today, I had a few minor 5 minute chores, and of course they took all morning.  I had meant to try a little bowflex in the morning, and I didn't get to that until around 2pm.   I skipped breakfast, but had some veggie chicken nuggets for lunch.   I surfed the internet mindlessly for a while.  Then I watched some TV again.   Finally, Sarah and I watched a movie this evening.  I really haven't left the basement all day.


The rest of tonight will be relaxing with some DVR'd cycling, and I bought a few baseball card packets to open today for a little distraction.   I do feel better tonight, though.  I'll feel OK in the morning, worse by evening, and then be nauseated and exhausted by Thursday.   I'm through 7 of 12, though, and that's another step.

An interesting postscript

Since ordering my new t-shirt, Trevor "Lights Out" Hoffman has blown TWO (of 2) save opportunities.  Unbelievable.  For those of you into irony, tonight he faced Albert "0 for lifetime" Pujols, who subsequently took him deep with a man on base.  Still, that wasn't the blown save since Milwaukee was up by 3, at least until Matt Holliday (next batter) hit a home run as well.   Luckily, although Trevor didn't get the save, he did get the win with a Casey McGehee walk off home run.   All this is wonderful, but Cardinals pitcher Chris Carpenter is on my fantasy team, and he contributed a -22, to combine with the rest of my slumping team.   Hopefully next week looks up.    


This is not a baseball blog, however, and so here is the news on me:


I rode up Lookout Mountain on Saturday.  It was cold and painful, and a very difficult ride for me, but I'm glad I went.  My time up was still pretty bad, but much improved from the last time I did it just prior to chemo on the mountain bike.  I'll keep working from here.  I have no expectations to get back to where I "should be" this summer, but hopefully just keep improving from here.   Realistically, just getting out there feels huge to me.   I also had energy to play Wii "Punch Out" which is something I haven't been able to play in forever, just due to the "workout" it is swinging your arms around.  (I guess I get pretty into it).  


Today, Sarah and I went to the Rockies/Padres game at Coors Field.  What was really nice about this, other than it being a fun game to watch, was that the weather was perfect, and we had seats in the shade the entire game!  So, sun sensitivity wasn't an issue.  Just a great relaxing day.   We also got to take the dogs on a nice long walk.


One curious thing I've noted is the anticipatory nausea.  I figured I might be susceptible to this, even prior to starting chemotherapy.  (My HS football coach told me I was the biggest head case he'd ever coached).  It is real, though.  Even walking to that building for a non-cancer reason starts me off a little.  One oncology pharmacist told me that it could maintain for years, and he'd heard stories of patients running into oncology nurses at the supermarket and throwing up.  (Wow!)  Mine isn't that bad.  It isn't even truly nausea per se so much as a weird aura.  I usually get it Sunday nights before chemo.  (It isn't so bad right now, but I had it earlier today during a lull in the game).  This past week I had it by Friday.  That was the earliest I've had it yet.  It just basically is an altered taste/hunger sensation.   I was hungry, but nothing sounded good.  Just a curiosity, I guess.


I should say yet again that the nausea has been far, far better than I ever expected.  When I was first diagnosed, I planned on buying a dry-erase board for my bathroom to track vomit.  As it turns out, I have yet to throw up.   Despite unbelievably powerful anti-nausea medicine, this surprises me even now, considering how easily I can vomit.  Don't get me wrong, I'm very thankful.


Nothing else new beyond that.  Tomorrow is session 7/12, or the beginning of my 4th cycle.  It really is nice to be past the halfway point, at least for the chemo part.   Hope everyone has a great week.

My new favorite T-shirt

I don't even own it yet, but it is my new favorite T-shirt.  Ordered today.

Those of you who know me, or by now "e-know" me, know that I love baseball, love the Milwaukee Brewers, and am a small time collector of Brewer oddities, miscellaneous trinkets, memorabilia, and other doo-dads. 


(This has nothing to do with cancer, and I promise not to make this a Brewers Blog, it is just what is going on in my head today).


Backstory to an inside joke:
Several years back I was back in Milwaukee at a Brewers game in Miller Park with Dave (of Dave's ride for Josh fame), and my old roommate Marv.  We had so-called "Uecker Seats" way above the press box, behind home plate, and remarkably close to the roof.  On this particular day, we had the blessing of sitting in front of three of the most goofy hilljacks I've ever heard.  I seriously thought they fell off the back of the turnip truck as it passed Miller Park on I-94.  The whole game long, we had the pleasure of listening to them argue, like high school nerds, about the most mundane topics.  Every statement they made, it seemed, needed repeating several times.  It took them the first two innings to establish that in football, who gets the ball first is decided by a coin toss, but in baseball, the visiting team bats first.  I swear on all things holy, they repeated a variation of that sentence no less than 15 times in the first two innings.  Their discussion of sports only declined from there.

At first, we were shocked that these were adults (and I'd estimate them to be around 40 years old) having this 2nd grade conversation, and we were hoping they'd shut up.   As the game went on, the sheer comedic brilliance of their material became clear to us (although they were very serious), and has provided years of laughs as the three of us relived their quotes.  At the time, current Brewer Jeff Suppan was playing for the Cardinals, and incidentally pitching (and winning) that day.  We heard "Soup's On!!!" at least 15 times as well.   When we got to the late innings, the discussion turned to that of the game's current greats.  They had already declared that Albert Pujols was the most unstoppable thing to ever pick up a bat.   However, they had also decreed that when (then San Diego Padre and current MLB all-time saves leader) Trevor Hoffman came in to close games, it was "Lights Out!!!!"   (We heard the phrase "Trevor Hoffman is Lights Out!!!" several times).

In a variation on the classic, "Who would win in a fight between Batman and Spiderman," one of them asked what would happen if Pujols ever had to bat against Trevor Hoffman closing a game.   This little scenario stopped them dead in their tracks cold.  Silence.  (Well, you could hear the gears very, very slowly creaking along in their heads).   What had been about 7 innings of constant jabbering became an eerie silence.  There was no answer.  It was the irresistable force meets immovable object. 

As it turns out, although these guys could not answer the question, there is in fact some historical data which does.   Thanks to the nice folks at baseball cube, we can say what would, and did, happen when Albert Pujols faced Trevor Hoffman:

All five meetings occurred when Trevor Hoffman was a member of the Padres, and all five times he seemed to get the better of Pujols.

After what, by then, seemed like an eternity, finally, one of them very quietly mumbled again, "Trevor Hoffman is Lights Out...."   Indeed, friend, it would seem that he is.

And so, for years "Trevor Hoffman is Lights Out!!!" became a very favorite phrase of ours.  You can imagine our excitement when, last year, Trevor Hoffman signed with our very own Milwaukee Brewers.  Trevor has very quickly become a fan favorite in Milwaukee, and in 2009 (and so far this year) he has pitched very effectively for the Crew.  Often times, after Trevor saves a game in Miller Park, Dave rushes to send me a very simple text message ("Lights Out!!!"), before I can send the same to him first.

That brings me to today.  For a while MLB has been selling customized T-shirts.   Any player you want.  I have spent much time thinking about ordering an old, obscure Brewers player from the late 80s or early 90s.  Definitely not a star, someone that only a true fan would know, and immediately upon seeing, start laughing.  The more quirky and average the player, the better.  I am still interested in doing this (and taking suggestions), but today I had another idea.  I ordered this shirt:

Why? Because Trevor Hoffman (#51) is Lights Out.  My only disappointment is that the MLB shop will not allow you to add exclamation points after a "player's" name.  (Actually, hopefully they let me even have this.)  Things like this, however, make me laugh.  Although many don't know the story above, few could argue with the end conclusion.  I only wish I could wear it to Miller Park.

Two more doctors

I had appointments yesterday and today.  Two new doctors.   Both were good appointments, however.


Yesterday's appointment was at the University of Colorado Cancer Center.  We met with an oncologist, but really the meeting was with a geneticist.  The question we had was that if Sarah and I were to have children, what would their cancer risk be?


As I've noted before, my sister had childhood AML (leukemia).  So, two siblings and two blood cancers.  It seemed like a reasonable question to ask, and the geneticist agreed, but anyone with a science background could have predicted the answer.  We did: the answer was "Unsure."  They were willing to venture a guess, and basically our kids would have double the risk for a blood cancer compared with the background of the general population.  However, given the rarity of blood cancers, the absolute risk remains quite low.   This is obviously only sort-of reassuring.  Since my sister's cancer was childhood, risk to her kids would be higher still, but similar story.


Prior to the appointment, Sarah and I filled out a detailed family history on other family members with cancer.  They made a very nice chart with it, and they'll keep track of it.  They requested that if we learn more about our family, we update them, and they keep these records for epidemiology purposes.  (In other words, so that later generations can predict better than we can).  In the end, the visit seems to be more beneficial to them than to us, but it was nice to know our expectations were about right, and that we weren't missing anything glaring.


My visit today was with a radiation oncologist over at the hospital.  It was a long but very productive visit.  We had a lot of questions answered, but there remain a lot (that likely cannot be answered).   We were under the impression that radiation following chemotherapy was absolutely imperative.  It was as if there was no question about it.   Today we learned that wasn't necessarily the case.


My radiation oncologist was absolutely great.  Besides being a cyclist, he took a very long time going through clinical trial after clinical trial explaining the findings.  He described the rest of the department, which have all come from a variety of major cancer centers.  He presented my case to many of them to ask their opinion.  What we discovered was a huge variety of treatment possibilities.  As it turns out, for Hodgkin's Lymphoma stage III, radiation doesn't have the perfect evidence that so many things in, for example, cardiology does.   Only one study showed a survival benefit with radiation.   What became clear is that while radiation does prevent relapse, the risks (other malignancies and other issues) were very real. Different academic cancer centers across the US would treat me very differently.  So, radiation isn't necessarily a foregone conclusion.


Having said that, he plans to meet again with my oncologist to discuss all possibilities.  We got the impression that if it were him in my position, he would go with radiation.  However, he wanted to limit the dose to a level below a threshold that had made Sarah quite nervous after all of her readings.  The other changes from our expectations were that it would probably be 12 week days of radiation, and I'd start 5-6 weeks after my last chemo instead of the 3 we had anticipated.   So, while I'll defer to both of these experts, it sounds like radiation is still on.   Still, the decision is mine, and it is not a light one.  There are definite risks to either case.  No radiation may increase my risk for relapse.  Radiation increases my risk for lung or esophageal cancer or possibly heart failure.   So, this isn't exactly like choosing on the showcase showdown of "The Price is Right," but you play the hand you're dealt and we'll talk about it more as time goes on.   In either case, no sense worrying right now, I have chemo to finish first.  

Why I'm not really looking forward to summer

Summer has always been my favorite season.  When I was a kid, it was long days filled with hours of Nintendo, all the pepsi I could drink, and baseball games out in the street if not pickup basketball.  Now it means longer sunshine, and the opportunity to get out and exercise.   It means outdoor meals.  It means relaxing at baseball games.  


For the first time, I'm really not looking forward to summer as much.  One of the problems with cancers and chemotherapy is how sensitive it makes your skin to the sun.  As it is, I took Lucy on a walk shy of 2 miles, and in that short amount of time, I had some burn despite cap, sunglasses, and long sleeve t-shirt.


So, over the past week, I've been contemplating a whole summer in the shadows.  Waiting until evening to bike.  Or a whole summer on the trainer.  Trying to watch baseball from the indoor part of the club level or exclusively night games.  Dog walks before dawn.  Hiking only in thick forests.  Spending an entire camping trip in the tent or screened in kitchen.  It wasn't really sounding good to me, obviously.  To further complicate my boo-hoos about it, this goes on for a year after remission, which will likely include next summer as well.


Sarah has already yelled at me about sunscreen, and I'll say right here how much I hate the stuff.  It is a constant fight to use it, and usually I don't.  I'm used to going out for long hours all summer long without it, going all the way back into my childhood.  (Yeah, I'm probably likely to move from blood cancers into skin cancer).


With the help of the bicycle buddies, I made two purchases tonight.   The first is a sunscreen recommendation seen here and here.  I also ordered sleeves and legs for cycling.  I really do not wish to wear these, but, I'm seeing no other alternative.   On the upside, though, that should be some decent protection for at least one outdoor activity, and if the sunscreen is as good as advertised, maybe all of them.