A desire to eat crab legs

Consider this an open invite.


One of the things I haven't had in months is crab legs.  I haven't had it since definitely before starting chemotherapy.  Not because I couldn't, but because I was encouraged to not eat my favorite foods during chemo lest they become not my favorite any longer.  


"Joe's Crab Shack" is a favorite of both Sarah and I.  It certainly isn't the ambience.   In fact, let's be honest:  the environment in there is basically what I'd call "barely tolerable."   The music is way too loud, it is way too cheesy, and the waitstaff is forced to act borderline obnoxious.  I'm not really sure why.  Plus, it is a gimmicky chain.  I'm not even sure how fresh the crab legs are all the way in Colorado.  Having said all that, it is still a favorite simply for the BBQ flavored seasoned crab legs.  

And so, on Saturday July 3rd, one week from today, Sarah and I are going back for crab legs for lunch (probably 11am or noon).  This will be our first time in over 6 months.  If anyone would like to join us, please email me and let me know.   I've been waiting for months, and am extremely excited to do this as part of a "reclaiming my life" feast.   So depending on your perspective, it may be an amazing (or disgusting) display of gluttony based on how I feel.   Afterwards, I start my diet and begin (resume) riding my bike in an attempt to peel off all this excess cancer weight.

Chemotherapy 12 of 12 (or finished ALL 6 cycles)

Today was my final chemotherapy, at least with ABVD.  I've gotten my lifetime dose of doxorubicin.  In other words, I cannot do this again.  If it failed, I'm on to something else, which is scary because ABVD truly wasn't the worst cancer regimen around, but if it failed there is obviously no sense in doing it again.


So, this will be a very special edition of Josh-Vs-Lymphoma, for two reasons.
1) I've finished my chemotherapy
2) This round was bad, I cannot sleep, and so it may be particularly insightful.


As I noted early on, I started this blog for several reasons with the biggest one keeping anyone who wanted updated on my progress without feeling as though they are bugging me (which I still don't mind, btw).  It is admittedly easier than so many emails, but I enjoy the email too.  The other reason is because journaling is supposed to be important as a process.  The last is so that it may be helpful for others or myself looking forward or back at different times.  I've tried to minimize the "other distractions," perhaps not so successfully, in order to give everyone a glimpse into exactly what I am going through.  I've saved some of the most unpleasant details, and some of the deepest thoughts.


So, why blog tonight so late?  I cannot sleep, and I assure you it is not out of excitement.  So, you may get some random thoughts.  As a warning, they may not be coherent, or, I may get tired again before getting to them.  


They saved one of the worst for last.  Wow.  This was a knockout punch before it was even fully delivered.  I don't think I helped myself.  One piece of advice from a fellow Hodgkins survivor was to not overdo it before I was done.  This great piece of advice is something I maybe should have followed but did not.  I tried to cram as much fun and activity into my "good" weekend before chemo as possible.  Why?  I finally felt like my old self again, something I can say about 4-5 individual days -to date- in about 10 months.  There was NO WAY I was going to take them easy, and despite the pain now, I don't regret one second of that.  


On Sunday, I rode my new mountain bike for 2 hours and 20 minutes, all up and down some shaded hills outside Conifer, CO.  I rode harder than I have in months, and I had a blast.  The nice thing about being a relative newbie again was that even in that short time, I learned things and got better.   I don't regret that even a little, despite the possibility it may be adding to my pain now.  I regret not bothering with recoverite when I was done, since the effort was harder than I immediately thought.  After that, I watched a bunch of TV and stayed up late in the hopes I'd sleep through chemo, which I did.


Chemotherapy was early, and morning came fast.  The day at the infusion center didn't go by so fast.  I did get my venti, iced, non-fat, caffeine-free latte.   Why?  Flavor and smell.  It has also occurred to me that I never have posted a picture of what chemo day looks like, so here goes:

So, the infusion center has two sides.  On this side, you have this view of downtown Denver and, in theory, the front range.   The other side I think I like better because you have a few of the helicopter ambulance pad:  A reminder that someone always has it worse, plus, who doesn't enjoy watching that action?   (This isn't a necessary reminder in oncology, by the way).   I'm reading a kindle that some very dear friends sent us upon diagnosis, and wearing a Salt Lake Bees hat my parents sent me from their recent travels.  Beyond that, I really don't even recognize myself anymore, despite the fact that I see myself in the mirror several times daily.  Who is this?  The hair is only a small part of it, I don't even recognize my face, and on chemo day, my skin color is all different.  I stopped shaving my head Saturday.  I cannot stop shaving my face, however.  At this point I cannot grow a mustache or a soul patch, and so in completeness, this would make for a very weird Abe Lincoln / Amish style beard.  The neck beard still grows like kudzu, illustrating yet another injustice of cancer.


On yout last chemo session, all of the nurses sing part of "Hit the road, Jack" to you.  I don't particularly like being individually sung to (except for maybe a mariachi band at a Mexican restaurant), but they also give you a nice card, which I just opened now as I type because I'm more awake now around midnight, than I was then.  Some of these nurses are just the most special people, but I do hope I don't have "Come back no more (no more,  no more)."  


I laid down almost immediately upon getting home.  I'm not sure for how long, but I got so much fluid, I was up to the bathroom about every 90 minutes.  I still am.   After a while, Sarah brought Chinese take-out.  I only ate half of my meal, which is unusual, but because I simply didn't need it all.  After that was about 90 minutes of DVR'd History Channel (I love the Ice Road Truckers) and then bed again.   I decided to sleep in the basement tonight because it is cooler and I had an expectation.


My expectation was bleomycin sweats, and it came true.  This is why I'm up now.  (Not a huge prediction, I've had it the last two doses).  I'm laying on the futon sweating and I decided to get more tylenol, which is the recommended cure.  Then, I laid back down and noticed how many little lights I had in the basement.  Enough to light up the fat heads of both Ryan Braun and Aaron Rodgers.  (For those of you sportsfans out there, I wrote one of the Rodgers fathead reviews.  Try to guess which one.)   So I'm laying on the futon, pondering life, and it made sense to blog since sleeping seems to be out, momentarily.  It also made sense since I typically write about each session the "Tuesday-after" in the morning and I expect to be a walking zombie by then.


I was correct on my prediction from yesterday:  I have to pee constantly, and I'm very thirsty.  I'm also dizzy and stunned.   I have no idea why the chemo hit so hard this time, aside from all the extra activity lately.   It has not yet hit me that I will not be going back for more just yet.   Why?  I still have 2.5-3 painful days ahead, and then radiation.  That's a best case scenario, too.  As noted, I still worry that maybe this didn't work and I will be going back and if that is the case, it'll be for something much worse.


Having said all that, I am a little excited to be "done" for now.  It is a tempered excitement, and the happiest part of it is that no matter what happens now, I'll have a few weeks (once past the impending days of fatigue and pain) of being normal -really almost back to my old normal- before the radiation starts.  Now I'm just being repetitive, but I really have not had that in going on a year.   I have a lot of work to do.  I'm going to eat a few foods that I've been denied for so long, and then I need to get to work on losing about 25 pounds, so I'm going to hit the bike hard.  (And eat more appropriately, after those few indulgences).  I can also start looking for the "new normal" that cancer survivors describe, since life never goes back to old normal.  Parade magazine talked about this yesterday: 

Last year Livestrong surveyed more than 2000 cancer survivors about their concerns. What was most interesting, notes Ruth Rechis, the foundation's director of evaluation and research, was that "even up to 20 years out, no one had had all their issues resolved."

Not surprising findings, but I'm not even officially one day out, let alone 20 years.   


Well, by now the tylenol has kicked in to mellow out the bleomycin late night party, so, I'll probably look for my sleeping bag again momentarily.


Josh Vs. Lymphoma:  Lymphoma may have taken the first few rounds, but I think with the help of the oncologist, we've battled back to at least even and probably more.  I sure hope it is time to deliver a few knockout punches of our own.

A mini FAQ update

Can a blog have an FAQ update without actually having an FAQ?   This one can.  Whether or not it should is another question, but one we will not be tackling tonight.


The number one question I've gotten lately pertains to how much I'm looking forward to tomorrow's chemotherapy session.   So, to do this right:  Q: How much are you looking forward to your last chemotherapy session?


A: Not as much as you'd expect.  Of course I am excited to be done, but it is still chemotherapy and I'm very much dreading it, as I have any of the last few.  The day likely won't be so bad, but I'm not looking forward to one more round of fatigue, mouth sores, and weird hunger and food cravings.  As always, just when I'm really starting to feel good, I'll get a serious knockdown tomorrow.  Sub-Q: What's that like?

Sub-A: 

There's a bigger picture aspect to this as well:  I'm a little bit afraid of the unknown.  For the past 6 months I've been on a very well defined treatment plan.  I'll have a little break, and then some radiation, but after that, then what?   The "r-word 1" (remission) has not even been used yet, and I'm already worried about "r-word 2" (relapse).


Q: Are you going to celebrate after tomorrow's session?


A: I'd sure like to, but chances are very good I'll be in my typical post-chemotherapy haze which involves being mildly dizzy, sort of tired, sort of thirsty yet constantly having to urinate from all the IV fluid, and a general stunned sensation.   We'll probably get some marginally unhealthy take-out, watch TV and I'll crawl into bed.   Keep your eyes on the blog for other celebrations coming up, however.


Q: What is your next step?


A: I'm hoping to find out tomorrow.  I'll have a P.E.T.-planning scan.  This is where they decide exactly where to "zap" me with radiation.  Looks like radiation will be at some point mid-July or so.  It'll be about 12 days:  5 days / week for 2 weeks (no weekends), and then 2 more days.


Q: Can you work during radiation?


A: I'm told, by my radiation oncologist, that I can indeed work during that time.  I'm also told I'll be more tired, but that this is better than chemotherapy.  (Thank goodness).  


Q:  Are you guys going to travel and take time off?


A: Yes.  All in due time, though.


Q: Will you live to see the Milwaukee Brewers win a World Series?


A: I asked the Magic 8 ball and got the following:

Not just "no."  However, I came to the conclusion all the way back in high school, that I could live to the full United States male life expectancy of 76-78 years, and I likely would never see the Milwaukee Brewers win a World Series.  Thankfully, Wisconsin is also home to the (12-time world champion) Green Bay Packers, although it is not the same.

More after tomorrow's session.  

"You believe in nothing."

This is what Sarah told me.   Yep, just like the nihilists (seen below) from my favorite movie "The Big Lebowski," I believe in nothing.  Or so I was told.

If we are talking about music therapy, aroma therapy, color therapy, homeopathy, Chinese herbs, German herbs, accupuncture, accupressure, hypotherapy, hydrotherapy, reflexology, light therapy, bee products, chiropractic, naturopathic, iridology, shiatsu, tai chi, massage therapy, meditation, magnet therapy, or alternate nostril breathing (what?), -Sarah is right, I probably do believe in "nothing."  As a pharmacist, I believe in good, old fashioned, FDA-approved pharmaceuticals based on SAR, or new drugs based on biotechnology; likewise I believe in the surgeon's scalpel.  

Now, all of these CAM sort of things probably do have their place, and likely do have some marginal amount of benefit.  Just ask Suzanne Somers.  (Oh wait, when her back was to the wall, she came around as well.)  Back to some of these things, I'll say that the coffee shop (any of them, by the way), has almost become "aromatherapy" for me, since that is the best smell I can think of for now.  

So, how did we get to this statement?  We were talking about these necklaces seen all over MLB this season, made by Phiten.

These are probably most famously seen on Josh Beckett.

"Experience the Energy."  That's the claim seen above.  Well, what does that mean?   So, I looked into the website.  Phiten makes some interesting claims.   The first is the Energy Transport System.

OK, good to know:  They stabilize the ions in your body.  I wasn't really sure that my ions were unstable, but if I purchase this product, at least I won't have to worry.

Through Aqua-Titanium, Phiten scientists were actually able to dissolve titanium in water.  I do hope my bicycle buddies who love titanium frames never let their bikes fall into the wrong hands of the Phiten scientists less they dissolve them in water!  On the flip, though, imagine the power a full bicycle frame could wield if it could be used to harness your now-focused and stable ions.   Moreover, who knew that titanium in cloth form can control your bio-electric current?

In X30 form, the concentration is 30 times higher, hence the name.  No wonder it is the choice of Major League Baseball.  Maybe Bud Selig and George Steinbrenner should get X30 necklaces - they're both reported to be in declining health.

OK, so the core of the necklace and bracelets isn't rubber, it has micro-titanium spheres.  How could I not be sold?   Yet, I was not yet sold.  So, let's read a few testimonials, shall we?

Here's an interesting one:

“BOUGHT IT BECAUSE OF CONSTANT NECKPAIN AND HEADACHES. PUT IN ON AND WOW NO MORE HEADACHES NO NECK PAIN. ONE DAY I TOOK IT OFF TO TAKE SHOWER AND FORGOT TO PUT IT BACK ON BEFORE I LEFT TO WORK. MAN I COULDN'T WAIT TO GO HOME TO PUT IT ON, MY BACK HURT AND HAD HEADACHES. NOW THAT SHOWED ME THAT IT REALLY WORKS AND ITS NOT IN MY HEAD. BOUGHT ONE FOR MY PARENTS AND THEY FEEL THE SAME. MOST PEOPLE DONT BELIEVE ME, ITS OK THEY ARE MISSING OUT."

Phiten also makes discs, which had some interesting reviews on Amazon:

A few months ago I started getting pretty bad pain in my left knee whenever I'd run 3+ miles. It's kind of like a soreness/stiffness on the outside, that would get worse after I sat for long periods of time.

The weekend before the NYC marathon I ran in a short 5 mile race which I ran at my marathon pace and still had knee pains for the few days after. Ice and Advil helped, but I was worried what I'd feel like after running 26.2 miles. Immediately after the marathon (my first!!) my knee was killing me, and I'd taken a ton of Tylenol throughout and didn't want to risk taking more. I got a sample pack for these stickers at the marathon expo and I figured I'd check them out. Literally after 1 hour having them on, my knee felt completely fine (although I cannot describe the soreness the rest of my body felt!). I have absolutely no idea how these things work, but the fact that I had no pain after using them after running a marathon, but had a lot when I didn't use them after a 5 mile race really convinced me.

I used them on my ankle the next weekend (I've sprained both my ankles and often get similar soreness/stiffness there) and it worked there too. Although I've only used them twice, I've recommended them to all my friends who have pain due to athletics, and now I'm recommending them to everyone on amazon! 

Wow.  So, if you have sports-related pain, just stick a phiten product directly on the spot and let the ions re-stabilize and the energy flow.   OK, so, I was a total skeptic.   Sarah told me as much.  So, I figured I would try the Milwaukee Brewers X30 (for 30 times the concentration) necklace, which I purchased from Amazon, since I had a giftcard anyway.  Here's how it came:

And here are the claims from the back of the package:

Let's be realistic here:  I've got a giftcard, and a product with the Milwaukee Brewers logo on it.  Anyone who knows me might say this isn't a huge stretch to get me to buy it, as goofball as the claims may be.  

So, does it work?  Well, I received my amazon package a few days after chemo.  Today, I am writing 2 days before chemo.  I could write a testimonial saying how much better I feel today.  That would probably be easily explained however, given how a chemo cycle works.   I have worn this for about a month already, off and on, which would involve two doses.   I cannot say that I feel like I have had my ions stabilized or that I've "experienced" the energy.  Maybe the fact that I am such a skeptic has prevented me from enjoying the full benefits of liquid titanium or titanium microspheres.  


I'm convinced these necklaces are handed to rookies on their first day, since I've seen them worn by guys making their MLB debut.  They aren't horrible looking and that's why I haven't thrown this thing out yet.  I like the little Brewer logos, so, it stays.   Maybe in time I'll "experience the energy."  Maybe I already am.   Or again, maybe that's just because I'm getting closer to being done with chemotherapy.  I'd LOVE to know if any JVL readers out there have tried Phiten products.

A fun Tuesday night climb

For a few years already, I've spent most Tuesday nights riding up Lookout Mountain with the local cycling club.  Last night, however, was a first for me because Sarah actually decided to come.  This was her first trip up Lookout on a bike ever.

She wasn't convinced she wanted to do it, nor do I think she believed she could, but the beauty is that if you cannot, it is all downhill to home.  That said, I was sure she would make it, and I was proven correct.  Pretty sure she had a fun time as well.

Here she is near Windy Saddle, a little over halfway up.

Below is a picture from the observation deck at the top near Buffalo Bill himself. 

It was a fun ride and we made decent time for a cancer patient.  Certainly not my best ever, but far from my worst as well.  We even felt good enough to do the optional loop around Boettscher at the top.  A profile of this ride can be seen here.  We didn't get up to the Country Club or Genessee, but definitely not bad for a first time.   Hopefully we'll do this again really soon.

JoshCrisps: A delightful snack

JoshPants™ rides again!!!   This time in the kitchen, however.


I decided to make my own parmesan cheese crisps, hence the name JoshCrisps.   Now, there's more to it than simply putting my name on an already existing snack, in order for me to do that, I must make some improvements.   


Sarah and I were eating some parmesan crisps from Whole Foods when I decided I could do this myself.   Parmesan is good, but my favorite type of cheese is Colby-Jack.  (Improvement #1)  So, I figured I'd make some Parmesan and Colby-Jack JoshCrisps.

What you see in the picture is the Parmesan already on the cooking sheets and I am preparing the Colby-Jack.  You can see they take on a different appearance.

There are many different recipes out there for cheese crisps.  All of them call for baking in the oven somewhere between 300 and 400* and for between 5-8 minutes.  I will not divulge my actual JoshCrisps recipe, but, I fell within that range.  Almost exactly in the middle of it, to be sure.


If you are feeling adventurous, you can season your crisps.  (Improvement #2)  I did that with a few and while I loved it, Sarah did not.    In any case, you can see here how the Colby-Jack ones turned out.

Most recipes call for a well-greased cooking sheet.  I used spray butter and if anything, I'd say my pans were too greasy, but I had no trouble removing the crisps.   The Parmesan JoshCrisps turned out pretty well.   The Colby-Jack ones were about as greasy as you'd expect, but I liked them none-the-less.   I ate all of those myself.


I did have an opportunity to serve the Parmesan JoshCrisps to some friends that evening and they were quite edible.  

Chemo 11 of 12: Odd this time

Chemotherapy yesterday went OK, but it was sort of odd.   I guess none have perfectly mimicked others, but this one especially so.


I had a 1:45 appointment with the oncologist but our goal was to get there at around noon for the blood draw just in case my port was clotted (again).   It was not and all went well.  Sarah and I had a small lunch at Quiznos (we split a "take 2:" she had a small salad, I had a small flatbread sandwich) before heading back.


Our meeting with the oncologist was busy.  I did have my typical physical exam, heart and lungs sounded "great" and of course the lymph nodes were still gone, so she was pleased.  Most of the meeting was planning for radiation and getting the port out.   After that was chemo.   During chemo, my nose was especially sensitive as I had to smell the disinfectant, the heparin, the alcohol pads, etc.   Worse, I had filled my bottle with ice water from home, and our ice smells terrible to me.   (Sarah cannot smell it at all).  It is OK in anything with flavor, but not water so I asked Sarah to get me some clean ice and water from the oncology water machine, which was luckily lacking in odor.


Because we had started late, we finished late.  We had a dinner of wraps and watched a shark show on TV, and then I went to bed around 8:30 or so.   It was pretty hot up in our bedroom, and I didn't sleep well.  In fact, I kept going downstairs for more water.  Around 3am, I gave up and grabbed my pillow to head down to the cool and dark basement to sleep.  I grabbed an old sleeping bag and set up on the futon, after cranking up the A/C another 4 degrees.   I did not sleep well at all, but at least I wasn't feeling fever-ish.   I never did get my temperature, but I didn't feel sick, just sort of hot.   The basement was much better and I got some sleep.


Around 8am, I was up and could not force myself back to sleep.  So, I laid there and watched a show about Mount Everest.   (Lately I've been sort of on an Everest kick for TV and books, and I'm not sure why).   In any case, I was finally up around 9:30am, although in my typical chemo fog where I wander aimlessly around the house.


It is now 1:20 and I've seemed to rebound a little bit.  I probably won't do much of anything today, but that is finally typical for a Tuesday after chemo.


So, not a very exciting blog today, but I do promise I have a few potentially more interesting ones cooking!

No news is good news!

I haven't posted in a while.  This is not in any sort of attempt to create the world's least interesting blog or because I have given up, I really don't have much to say and don't wish to bore anyone.  No news is good news here.   I've had to re-assure my parents of this several times.  I do have two blog-worthy projects I am working on.  


This half-cycle has been OK.  I've been fairly tired: maybe not quite much as others.  This time the tired just dragged out a little more - I didn't need to go to bed right after work the week of chemo, but I was still recovering even into the holiday weekend.   


So, what did we do for our holiday weekend?   Not much.  Travel is still sort of out for us, camping is unclean enough that I don't want to do it while neutropenic, so it was another weekend mostly around the house.   Sarah planted some flowers.  We washed the cars.  We went on two very mild bike rides, watched some baseball, and mostly tried to recover.


I feel pretty good this week, though.  Getting excited to move on past chemo in another month or so, but not really looking forward to radiation.  We're trying to think about where we may like to visit assuming all the rest of this goes to plan.  Rather than somewhere new, though, we're really thinking we'd like to get back to Wisconsin and South Carolina.  We'll possibly do something more adventurous down the road, but more and more I've been daydreaming about relaxing on Folly, and maybe getting some Frogmore Stew.


What else?  Sarah let me buy a new bike.  I'd been saving for awhile, but the purchase even surprised me a little.  Since I cannot enjoy the kind of road rides I'm used to, I decided to try my hand at mountain biking a little.  I figured I'd try to maybe develop some skills there and just sort of have a good time rather than do any goal setting or anything like that.  As such, the one rule I made for myself is no computers on the bike.  Maybe next year, but for now I'm not tracking a single mile.  I ride until I'm out of energy, out of time/daylight, or I've had my fill of fun.  

I've been riding with Sarah as well, and she's been riding with two different clubs.  So, putting a happy face on it, I'd say that cancer has presented me with the "opportunity" to have a couple different kinds of fun than I am used to for biking.  Deep down, though, I'm hoping that as I get out more and more now and ride (with the relative anemia or whatever), that possibly I come back as some sort of fit monster.  Unlikely, of course.  I'm pretty sure I'll have to make it all up with extra intervals and trainer time this winter, which is OK too.  It certainly beats this past winter by a longshot.