One Fun Thing: Times Four

Josh-Vs-Lymphoma has been quiet for a few days now.  While I do apologize for that, the reason is good.  Sarah and I did "One Fun Thing" four times since last post.  Four Fun Things, I guess.  The reason was partially timing, and partially because I do feel unbelievably well right now.


Thursday night, we had Avalanche tickets.  Our company frequently offers great discounts to the Colorado Avalanche and we try to go a couple of times each season.   For those who haven't noticed, the Avalanche were expected to be terrible this season, but they are definitely hanging in there so far.  They lost 1-0 to the Minnesota Wild, however, on this night.


Friday night was dinner with a few friends in Denver.  This was great because we hadn't all gotten a chance to hang out for a couple of months.  Many great laughs were had.  As noted, I'm pretty much able to eat what I want right now without nausea, but I had a salad.


Saturday was two fun things.   Almost a month back already, Sarah had gotten us tickets for a Coors Field tour.  Many of you know that I am a huge baseball fan.  I had hoped to take this tour already over a year ago when I had a week off, but my week was wrecked by a nasty cold and some new carpeting in the house (necessitating me to stay home).

The Coors Field tour is a walking tour about 90 minutes long.  It cost us $7, but I think if you walk up beforehand, it is $3 or $4.   I would suggest it is worth it at either price if you enjoy baseball.


The first part of the tour was actually the boring part - seeing the upper deck.   I'd sat in the upper deck many times, and most of the fun facts we learned were not new to me.  What I was really waiting for were three specific features.

Although I work as a pharmacist, what I really wanted to do in High School was work as a Sportswriter.  So, I was excited to see the press box.  Many times I'd tried to peer in using the camera zoom lens, but this was neat.  I had a front row seat while our tour guide gave us the next set of factoids - very few of which I actually knew.  The view is tremendous - far better than what I'm used to when sitting at Rockies games, I can say that.

The next section I was very eager to see was the clubhouse.  The tour only takes you to see the visitors clubhouse, since the Rockies' clubhouse is actually in use, even now, as many of the players prepare for Spring Training.  After the tour, I asked the guide who she thought was the hardest working player, coming in most often to work out.  Not surprisingly, she felt like it was Todd Helton.


The Rockies' clubhouse is about 3x that of the visitors' seen below.  The clubhouse is about what I'd expected from the movie Mr. 3000, which has many different MLB clubhouse scenes.


As a pharmacist, I would have LOVED to have had more time to read these (pics should enlarge upon clicking on them).   I wish I could obtain a copy of the second one.  I should write Bud Selig another letter and see if I can get one for my basement.  (Or just call the number at the bottom of the poster).

It does say that "Anti-Estrogen" is banned.  That means you, Manny Ramirez. 


Here is what it would be like sitting in an MLB player's chair.  It is interesting to think of all the players that have sat in these chairs.   As you can see, I wore my official 5950 Rockies hat (free from the Rockies on another occasion), and sweatshirt.  Yes, I am that excited for baseball to start.

The tour ends in the dugout, and you can walk around part of the warning track on the field (which is now very much full of ice.)  Sitting in the dugout was fun.  


Standing out on the warning track looking at all the seats is pretty impressive.  You could almost gain a sense of how intimidating it would be to be a pitcher who has just given up a big hit or run.  As any baseball fan knows, Coors field is not the most friendly place in the world to pitchers -home or away.

Here you can see the snow and ice and current state of Coors Field, including where we were allowed to walk.   In a few weeks, heating coils under the field will begin to warm it up in anticipation of the home opener and the season.


In conclusion, the tour itself was a fun time.  We had a few oddballs on our tour who asked some absolutely outrageous questions, which are not worth printing here, but made Sarah and I laugh.  A quick trip to the Rockies store, and the bargain of the day I could not pass up was a "Rocktober 2009" sweatshirt for $25, made of Majestic's Thermabase material.  (Normally about $80).


One (last) Fun Thing was dinner with other friends on Saturday night.  Ann and Brandon made specific mention that they wanted to waive the Josh-vs-Lymphoma privacy policy and we had dinner at the Table Mountain Inn Grill and Cantina here in Golden, after we spent some time playing with Lucy.  It was a great time and we ended up just about shutting the place down listening to Brandon's stories from the road in California.


Today will be spent with lots of odds and ends preparing for tomorrow.

My Drinking Problem: Part II

First off, an update:  I actually feel pretty good.  Pre-cancerous, to be truthful.  At this point, I'm solidly into my "off" week, but I have absolutely no nausea, great appetite, I'm not very tired, and I haven't dealt with fevers/chills in a while.   Really the only complaint I have is this on and off nagging pain in my left forearm and wrist, which I believe is due to the dacarbazine.  I had emailed my oncologist about it on Tuesday, and was slightly admonished, over the phone, by the oncology nurses for not calling instead.   They felt it was more important to know immediately; I could not see what could be done in the short term and thought email would suffice.  It isn't the worst pain ever, but it is nagging enough I haven't been wearing a watch.


Secondly, another update:  Tonight with homemade pizza, I had most of one of the little Coronitas.  I was not craving beer, but rather I had it in the name of junk science.  After some debate with two separate pharmacist friends, I figured I'd give it a shot.   One of them was quite curious to do the math to figure out the actual amount of alcohol it takes to create pain, but I'm not up to that (admittedly easy) math tonight.  Nor do I feel like measuring.  :)   Results:  I have no headache, but, I popped a percocet with it.  So, we probably learn nothing.  I'm feeling unbelievably relaxed right now, though.  (Go figure)   As a pharmacist, I do not condone this, just for the record.   Do as I say, I guess.


Thirdly, yet another update:  Yesterday, I had the results of my bone marrow aspirate released to me through my provider's online system.


What you are looking at on the left is an excerpt from the report.  Although I had known the results for a while, it is really nice to see in print.


Having "clean" marrow is obviously a good thing.  It is more positive for prognosis, and should I ever need a bone marrow transplant, it can be autologous.


Finally, my drinking problem, part II:  I had wondered to myself what you, the reader, might find interesting today on my cancerous journey.  One thing that came to mind was just how much in terms of fluids we have in our house right now.  I'm very impressed myself, I think Sarah and I have reached a peak in terms of beverage diversity.  This was partly by accident, partly by "impulse buy," and partly out of desperation.  Approximately half of this was from pre-chemotherapy.

This is a photograph I quickly put together representing much of our beverage diversity.  It does not represent volumes, and I have left out all wines and liquors (and many beers).  What are you looking at?
A&W Cream Soda
A&W Diet Cream Soda
Throwback Pepsi   (I just liked the old logo can)
A&W Root Beer
Capri Sun
Big K (generic) Sparking water
Capri Sun
V8 Splash
Grape Gatorade
Ruby Red Grapefruit juice
Sprecher Cream Soda
Sprecher Root Beer
Light Blue Gatorade
Boulder Cold Hop Beer
Ocean Spray Blueberry Juice
Coronita
Estes Park Brewery "Redrum Ale" - special to the Stanley Hotel.
Starbucks Light Frappucino
New Belgium Fat Tire beer
Apple Juice
Some Italian Spritzer
and finally, Skim Milk.


The obvious question is:  Why?
In learning the ropes of my new life, I was told at Chemo class there were some things I could no longer have.  Orange Juice was specifically mentioned.  During chemo, anything acidic might be problematic because you are sloughing good cells of the digestive tract.  That eliminates many sodas and my very favorite Ruby Red Grapefruit juice.   I was told to drink a lot of Gatorade around chemo.   Sarah and I thought the V8 blend as well as the blueberry and apple juice might be less acidic substitutes.  


During chemotherapy, (as noted previously), I am to drink eight 8oz cups of water.   Caffeine counts negative.  The Starbucks was purchased last week because I was so tired all the time, but it obviously counts negative, so I try to minimize.


One of the biggest problems I've had in terms of nausea is gastric distention (I need to belch).  The problem is, it is nearly impossible to.  It is really rather annoying.  As such, between that problem and the acidity of most sodas, I have not had any since starting chemotherapy, with one exception.

Ginger Ale is another little miracle in my life right now.   Obviously long known for its anti-nausea properties, Sarah bought some thinking it may help.  I tried it.  Although gross to describe, this beverage brings nearly instant relief.  So, if you happen to be hanging around me and I am either drinking it, or trying to hide a burp from you, I apologize, but let me say again:  it is some serious relief.  I have not yet  (since chemo) tried the pictured Sprecher Ginger Ale, but I suspect it will work just the same.  For those of you not familiar with Milwaukee, please allow me to plug this brewery (and gourmet soda maker) right here.  It is a little expensive (especially to ship to Colorado), but it really is one of Wisconsin's treasures.   I'm unsure if the mechanism of relief is the carbonation forcing the gastric distention to the point of finally allowing a burp, or due to the ginger itself.   I suppose my next low-grade research project will be to try a non-ginger ale soda (or maybe the sparkling water) next time I'm feeling this sensation, but safely away from a chemo session (and possible mucositis).   

My drinking problem

Yes, alcohol.   No, likely not what you think, except those of you well versed in oncology.


Where does this story begin?  It starts before diagnosis.  In late November, I had purchased one of the new Coors Light "Fridge Packs."  It looked just like this, only for Coors light.  It comes to around a gallon or so, and you have about a month to finish it.  I did finish mine just about 2 days short of a month, but on my last glass, I developed a headache.  I thought nothing of it.


Days later, Sarah and I went out for dinner on Christmas Eve at Benihana as per usual.  With dinner, I ordered another Coors Light in a bottle, and by around 2/3 of the way through, my delicious tuna steak was ruined by a severe headache.  I stopped drinking, but could not figure out why I felt as though something was drilling from my left eye to the back of my head.  Driving home was very painful.  I couldn't even wear a ballcap.  I've never had a migraine.   By New Year's Eve, after my VATS surgery, Sarah made us coffee drinks which included several types of liquor.  (For those interested, it was actually great - get the recipe from her).   Yet another headache.  It was now clear I hadn't developed some weird allergy to Coors Light.  


Sarah did some research.
This was an interesting finding.
I'm not wild about the "associated with other factors generally considered to indicate an unfavorable prognosis" part, but, what can I do?  Plus, it was written some 30 years ago.  At least it explains why suddenly I can't handle a little drinking.


I actually am not a big drinker anyway.   That said, I do love a good beer from time to time.  (I do realize I twice typed about drinking Coors light.  Please keep in mind that I live in Golden.)   What to do?   I'm hoping this goes away with the disease.   In the meantime, I have had sips of wine if Sarah is having some, simply to have a taste, and without resulting headache.  But I'm not prepared to waste a full beer just to have the first couple of ounces of it.   


A solution?

Yep.  You've seen these little 7oz beauties at your local seafood joints doubling as salt and pepper shakers.   At our hotel in Mexico, it was nothing to polish off about 5 of them from the fridge before hitting the beach.


I'm not wild about Corona, but I like it.   My guess is I'll have to sit tight on IPAs for a while.  It is probably a perfect middle of the road splurge while dealing with cancer anyway.


I haven't cracked open the first one yet, but Sarah said she would be happy to split whatever I don't finish.    One of many little "solutions" I'm finding in my new life.   

Thoughts of appreciation

It has been just about a week since I started chemotherapy and not quite two weeks since I've started this blog and made my little "adventure" public.  Still, even though it has been a relatively short time, I feel like this particular post is long overdue.   The only thing I want to do today is express my gratitude.


I have made it my own policy to not mention names in this blog beyond my own and Sarah's.  It may be an overzealous step in this "Facebook/MySpace/Twitter" age, but one I've adopted none-the-less for reasons of privacy.  Still, I'd like to generically and publicly thank, well, everyone.


First I'd like to thank Sarah (as the only exception to mentioning names), for all her obvious support.  I couldn't even begin to list all the ways she has helped, nor list all the bad things she has had to put up with thus far.  In fact, she is right now reading primary literature on Hodgkins Disease with her pad of paper at her side for notes and questions.  Knowledge is power, but I simply cannot do this reading at this time.  What would I do if she weren't here to do it?   It likely wouldn't get read.  Much like when we were in pharmacy school together, I'm hoping she gets all the details, and then gives me a nice summary after. 


I'd also like to thank everyone else.  We have some amazing friends and family near and far.  All the emails and cards and notes and comments on this blog have been unbelievably supportive and inspirational.   We have read every single one and they are all helpful.  The generosity that has been shown to us is nothing short of astonishing.  The gifts, food, time, advice, stories, and offers are beyond words and I cannot thank everyone enough.   I've heard from several cancer survivors, and to those folks I'm especially grateful for all of the honest insights.  My sincere hope is that I can join your ranks someday and be half as helpful.  Thanks to those of you who have listened to me complain.  Thanks to those of you who have answered my questions.   Thanks to those of you who have simply provided a fun distraction.


It is not even close in magnitude to the thoughts I'd love to express, but once again, Thank You.

One Fun Thing: Wii Battle

"One fun thing" today involved a couple of friends coming over to visit.  Initially, we had planned on going to the Golden Bowl.   The Golden Bowl is a lot of fun, not to mention they have Chinese food by the scoop, however, I thought this may not be the best option for me.  The reason for this was a relative lack of cleanliness (not that it is dirty there, just bowling in general), plus, I'm still technically on a lifting restriction from my surgery.


So, Wii bowling it would be.   The four of us played Nintendo's Sports Resort rather than Wii Sports.  After bowling, we did some wakeboarding, and then the fun peaked with some "Sword play."

Here you can see the likeness of our "Mii" characters in the Josh Vs. Sarah battle.   As it turns out, this game is pretty random, but the fight was pretty even.


I had another enormous dinner (of Q-doba again), and I actually feel pretty good tonight.  Another "Mr. Freeze Pop" is probably on the way later.


Not bad at all for "One Fun Thing," and it was great to see our friends and their baby.  Tomorrow will likely be some relaxing and maybe a little bit of work and possibly errands.

Thursday and Friday

Thursday and Friday were good days, but not great ones.  I did manage to work both days.  I had nausea for both days, although by the evenings of each day, it was mostly subsided.   By now, I'm impressed with the level of fatigue that I have during the day.   It is unclear whether it is from poor sleep at night, the disease itself, or the compazine.   By Thursday mid-day I'd given up the compazine.   That evening I was really hungry, and craved Ali Baba gyros and hummus.  Sarah was gracious enough to get it for me, and she had a chicken kabob herself.  I couldn't finish my gyro, but what I really wanted was the hummus for some reason.


By Friday, I could no longer tell nausea from hunger.  I can't explain that, but it is just a vague sort of stomach pain.  When I have it now, I try to eat a little something to see.  Lately it has been hunger.  By lunch on Friday, I was needing a Q-doba queso burrito.  What was odd about this craving was that I'd never had one before.  It was everything that I'd hoped it would be at some ~1100 calories, and by the time I was done, I was ready for another (but thought better and didn't).

My two complaints for right now are mucositis and not thinking as clearly as usual.  In truth, I have no mouth sores yet, so any mucositis is mild so far.   It basically feels like a burning sensation on the sides and back of my tongue.  One positive to this is that it really helped me hit my targets on fluid intake.  Milk seems to cool things off for longer than water and ice.   I also had a Mr. Freeze pop last night too.  Still seeking my perfect solution for candy to suck on, although the suggestions I've gotten so far have been OK.   At work I really enjoy Atomic Warheads and Sour Patch Kids, although I imagine that eating those are over for now as well.

The other weird thing is how much (more) of a space cadet I've become.  Classic example yesterday was a call from another department looking for an antibiotic, but seeking to use one we do not promote at my company.   What typically would've been a knee-jerk reaction for me to the choice we ultimately came to probably took 4 minutes of debate.  Once we reached the answer, I was shocked it wasn't knee-jerk anymore.   Perhaps I was just tired, but I've definitely spaced out more this week.  I don't have a picture of me as a space cadet, but I do have the following for your enjoyment.   It is a picture you get from "Spaceship Earth" at EPCOT.  Sarah and I were there in October, and so you can see what they imagined our future might look like.   

Back to work and starting school

I didn't sleep well last night, but I definitely felt good enough to go back to work.  I was up almost an hour early, so it was no surprise that I was so tired by mid-day. 


However, it did feel good to return to normal a little.  Work went by pretty quickly, but it was a good day, broken up by two meetings.   I did have to get a coffee eventually, which sort of "counts against" the 8 cups of water I am supposed to be drinking.


Drinking 8 cups of water per day isn't easy (for me).   Each day I fill up a Nalgene bottle, and typically bring it home with maybe 4 or 8oz gone, and Sarah commenting how much more I should be drinking.  Today I did better, and got half of it, plus a few other drinks throughout the day.


I am glad I got the coffee, though, because tonight was Lucy's first night of obedience school at the Pup-e-ssori.   


We worked on "sit," "down," and "come."


What can I say?  Lucy likes school.   Moreover, it was nice to get out and work with her.  


By now the nausea is pretty well down.  I'm still taking scheduled compazine.  Due to the lack of sleep last night, I am tempted to try some lorazepam tonight, although I may just be tired enough to not need it.  All in all a pretty good day.

Definitely off today

I wasn't sure if I'd be able to work today or not. 
I told Sarah to wake me up when she got up for work, and I'd make a "gametime" decision.  When I finally woke up, I noticed it was about 8:40am.   So much for that.    She had called in for me.


Backing up, I didn't sleep great again, and I have no idea why.   Meds?   I did take a percocet somewhere around midnight (I think?) so that should've done the trick, but around 1am (?) I became very activated.  I was tempted to go downstairs for a little Wii action, but thought better of it.   Sarah didn't give me the choice - I needed the day off.


Truthfully, I was exhausted all morning.  I drank a blueberry and peanut butter smoothie and had some water.   I took my Emend and some compazine, tylenol, and zyrtec.   I'm not really sure where the morning went.  I ate a bagel for lunch and had a shake too.   I watched the second half of Bull Durham and some other TV and beyond that, I'm honestly not sure where the day went.  I felt too tired to walk the dogs with Sarah. 


Tonight will be more of the same.  Probably some oddball bland meal and maybe some more TV.  Hopefully I can get to sleep early tonight and get to work and catch-up tomorrow.


Edit:  what a boring post.  I realized this later and apologize.   I left no links or pictures or anything.  Well, some days are probably going to be like that.  Today won't, however.   

For those who didn't know, Sarah and I got a new boxer puppy about 2 months back.  Lucy is a handful, but she is really cute and brings a lot of laughs.  Much like Winnie was, she is a relative angel to me, and something of a terror for Sarah.   I have no idea why.   In any case, here is one of our newer pictures of her with Cookie (Cookie is the Schnauzer).


Lucy's first day of obedience school is tomorrow.  Fingers crossed.

Chemo Round 1/2 of 6 (or, 1 of 12)

Today was my first chemotherapy treatment.   I'm wasn't sure what the best way to approach this was, but my thought was to go into it slightly tired.  (And I did).   So, I stayed up until about 11:30 last night.  The thought was that I'd be more likely to sleep or be mellow, and less likely to notice side effects.   I'm not sure if this was wise or foolish.  Probably the latter.   As it turned out, around 1am, I was up with the shaking chills that have characterized my illness for months.    So, I got very little sleep.


**BTW, if you're uninterested in reading about the nitty gritty of side effects, skip to the very end, or even wait until tomorrow or Wednesday**


Breakfast was some instant oatmeal.  I was told to eat something substantial, but not "heavy" nor "greasy." In addition to the chills, I had some GI issues this morning, so I was already feeling fairly badly going into treatment.   We went to the clinic and got there around 9:00 am for the "Chemo Class."   The class had 7 people, of which 4 were patients.    The class itself was alright, it was very generic overview of some precautions and some strategies for side effects.   Basically, I'll need to do special mouth rinses, and I'm not supposed to eat sushi now for a while.  I also shouldn't have soda around treatment time, unless "de-fizzed" ginger ale or 7-up, and I need to postpone my upcoming dental appointment.   I also need to start thinkng about shaving my head, probably in about 2 weeks.  After the class, which was taught by a nurse, we saw a video which was basically a repeat of all the same info.


I then had 30 minutes, and I was hungry again, so I had some cracker sandwiches, some gatorade, and a few mini-chocolate donuts.   I took some time out for "GI fun." Then we went up for chemo.


I was still alternating between the hot and cold thing since I skipped ibuprofen not knowing if I should be taking it or not.   (As of now, I'm supposed to really minimize it due to the problems it can cause to the GI tract, which all chemo assaults pretty heavily, and due to its affect on bleeding, which chemo also affects).    My nurse was absolutely great.   She was extremely knowledgeable and very kind, and spent a lot of time in explanation of everything.   Although the process is supposed to be about a "half day," in theory it could be less.    It wasn't today, though.  The IV line she placed was actually a very small IV which was placed on my top of my hand.


They start IV fluid, and then I got some anti-emetics.  Sarah wrote the doses, but it was IV Zofran, IV Decadron, and oral Emend.  The Emend is sort of interesting, I'd been wondering about this drug since summer - long before any sort of diagnosis.   I had to study for a pharmacy exam, and this drug was in the study materials.  I'd actually never heard of it to that point, and so I was a little surprised something so big escaped me (not like we deal with tons of nausea in infectious diseases, though).   


After that, the chemo starts.  As I've noted before, my regimen is ABVD, and that is the order they give it in.  Adriamycin (or doxorubicin) is an IV push from two syringes, for as much as I needed.  It is sort of neat watching it being slowly pushed, the color is something like Hawaiian Punch in the syringe, but it flows in with the saline drip at just the right rate to dilute it into orange colored "streams."   It was almost hypnotic, truthfully.  This one should turn the urine red, but I haven't seen that yet.     Bleomycin is next, and this is one I've been worried about with my lungs.  The side effects for this to note are dry cough, shortness or breath, etc.   Unfortunately, the symptoms of my disease thus far are the same.....    Vinblastine was a little bag which went quite quickly, and then the dacarbazine (or DTIC) was last. 


All of these drugs are considered desiccants, which in the world of chemo is not entirely the same as in the chemistry lab.  In either case, the goal is to be sure extravasation does not occur.   Dacarbazine was a drug that an oncology pharmacist friend in Texas had warned me about, suggesting that if it was painful at all, tell the nurse immediately.   The first 3 drugs went in without any sensation, except perhaps being slighly cool.  I was worried I wouldn't know if I had an issue, but the nurse assured me it would be quite obvious if there was a problem.    This one did hurt some going in.  Even though they place a warm and dry compress on the arm to keep the vein as wide open as possible, I did have some weird sensations.  The nurse checked it several times, and it was OK, but eventually slowed the rate of the infusion and increased the saline drip that was going with it.   This may have helped marginally, but it was nice to know it was simply pain versus a real extravasation.  In the world of pain, I would have rated it no more than a "3" as a minor annoyance, I just kept worrying about something going wrong.


What else can I describe?   All the fluids and the chills made me have to urinate about once per hour while there, which required me to do a funky dance taking the IV pole into the bathroom.   However, once done, I felt pretty good.   I was a little tired.  Because they slowed the rate of the DTIC from ~ 1 hour to ~2 hours, Sarah and I watched part of Bull Durham on the DVD player she had purchased for my hospital trip last month.  I was fighting to stay awake towards the end of the infusion when we wrapped up.  I'm not sure if that was due to lack of sleep last night or fatigue from the meds.  Or both.


On the way home, we stopped to pick up some bagels as a "bland" food I could put peanut butter on for protein.  I still felt pretty good and was sure I would be at work tomorrow with no problems.   However, when I got home, I took a quick hour nap.  Now my GI tract sort of hurt (more pain than nausea, but not cramping), as I woke up, and then had myself a decent diarrhea session.   Midway though that, I was starting to get worried about vomiting.  All the autonomics and auras were kicking in. So, this really was just like the wee hours of the occasional college bender -triple threat!- without the fun beforehand.   (or rather, a different kind of "fun" beforehand.)   


**IF you did not want to read the sick stuff and skipped - you may resume here**


I took some nausea meds (compazine and ativan) and things are better now, although I'm definitely slowed way down.  I'm definitely kind of foggy in thinking too.  I'll probably have a smoothy very soon, or maybe a shake. Watching TV with a show that was spinning (Simpsons) didn't help, so I turned it off and attempted to fix / reset our cable modem and Apple Airport, which was a lovely task for today.  (Obviously, Sarah and I got it working, though).   


I thought for sure I'd be working tomorrow, now I'd say I'll need a huge night of napping and no nausea.   I do have more Emend to take first thing in the morning, along with compazine, and probably more tylenol for the fevers / chills.  We'll see.  


Last curious thought:   My impression from pharmacy school (keeping in mind I have ZERO background in oncology) was that regimens become harder and harder to take over time.  This was the opposite told to me by our oncology pharmacist and my nurse, who suggested the first regimen was the worse, and after that the body starts to tolerate it better.   I hope so.  This is a large reason I'm hoping not to vomit just yet - I'm not sure if that will or will not be a harbinger of more trouble in rounds 2 through 12.   I really hope this is truly the worst I'll see.  If so, I don't mind being a little knocked out for a day or two, knowing that may not happen on future rounds.    Time will tell.

ONE FUN THING: Downtown Aquarium

I'm not big on resolutions, I never bother with them for New Year's or anything.  However, one piece of advice I got several times, most importantly from two oncology pharmacists, was to just try to live life as normally as possible.   This sounds OK, but I have no idea what "normal" is anymore.  Most of my fall was spent feeling kind of crappy, until I figured out that a bunch of ibuprofen would help.

So, I'm not really interested in "normal," although I understand the importance of it.  However, I did make one resolution, and that is each weekend would include "One fun thing."   


One fun thing, as of yet, has no serious parameters, it just must be somewhat outside of "normal" for Sarah and I, and it must be fun.   Incidentally, we are currently taking suggestions for "One Fun Things."  It can be as simple as game night, or as extravagant as a weekend away.  It just must be fun.


This weekend was especially good, since technically, we had three fun things.   The first was my bike ride, which is definitely outside the norm by now.   The second was dinner at some friends' house last night, which was delicious and it was great to see them, since their friendship and generosity means so much, especially at this time.


Today's fun thing was going to the "Downtown Aquarium."  Neither of us had ever been there before, and we'd been meaning to go for some time.   $30 got the both of us a self guided tour which took about 2 hours or so.   

I honestly did not expect much from the aquarium since Denver is so far from any serious body of water.   While this aquarium cannot compare with the Monterey Bay Aquarium in California (what can?), Sarah and I were very impressed.  


The neat thing about the Downtown Aquarium is all the tubes and tunnels which allow you to see the fish from above and below, instead of just from the side.   As you can see, we got a shot of a ray from below, and further on the tour we stood over some clear "portholes" in the floor which allowed observation of some sharks.


The Denver Aquarium also had a few birds, and some reptiles as well.  I hate snakes and eel, so we skipped by those pretty quickly.  They also have a tiger, which was interesting.   We saw his "tiger toys" which were about the size of a basketball and which he destroys in about 10 minutes (reportedly).  


The other thing I was disappointed to see were lionfish.  I have hated lionfish since I was a kid and saw them at the Milwaukee zoo.  They are gross and nasty and venomous.  As an aside, at Disney World this year, we saw some kids playing with stuffed lionfish.   Even the stuffed animal is gross, but I ask, "what sort of a kid would want to cuddle up with that ugly sea monster?"   In addition to just being as ugly as they are, lionfish are now a serious problem in the SE and caribbean.

I have been to a few aquariums before, but one thing I have never seen in person was a shark swimming around just showing off the chompers.  Yikes!   You can SCUBA (well, not me once I start bleomycin) or snorkel in these tanks, but I cannot imagine wanting to.   It was amazing, instead of mouth-kept-closed, two sharks were just showing off.  


One person at the aquarium had apparently bought his buddies the opportunity to SCUBA in there.  He did mention asking about sharks, and was apparently told the sharks are kept "well fed."
Then the guy joked asking if they went around counting all the fish in the aquarium.


I've attached a few other pictures I liked.  I'd never seen this weird polka-dotted fish before.  Sort of reminds me of a Holstein, but I am from Wisconsin.


The Downtown Aquarium also has a restaurant to eat in.   I'm told it is quite good, but we didn't stop. I suspect that eating there may be a "One Fun Thing" of the future.


The Downtown Aquarium was a nice distraction for the day.  It only took a few hours, which was perfect since so many other errands needed to be done today (and yesterday), in preparation for the weeks ahead.


Tomorrow is the first day of chemotherapy, so I can say that despite being extremely busy (with things yet still to do!), it was a very nice "last" weekend before things really start rolling for me.




  

Riding up Lookout Mountain

I enjoy bicycling.  Every since my knee surgery, running has not been the same for me, and I don't enjoy swimming in winter.  Colorado has some of the finest cycling around.  So, bicycling works for me.

Typically, winters mean long hours with the trainer.  However, every once in a while, even in winter, the sun peeks out and things warm up.  The high today was 55* per Apple Widget, 57* per car thermometer.  I wanted to take the opportunity to get out and ride.


My favorite ride around is Lookout Mountain.  Lookout is right here in downtown Golden, CO, and so it is extremely convenient.  Although we have a community center (gym) in town with all your typical fitness-equipment type of devices, Lookout is like the ultimate outdoor playground.  On a given summer day, you could run into cyclists (road, mtn, and unicycle), hikers, runners, trail runners, dog walkers, skateboard racers, parachuter-people catching thermals, climbers, hang-gliders, model RC airplane enthusiasts, photographers, and tourists.  The perfect thing about riding Lookout, is that there are so many optional extra loops and possibilities at the top that keep you going up if you are so inclined.  Otherwise, you can cruise down and be done, or indulge in some repeats.


Today was mostly cyclists and tourists.  Maybe a couple of the model airplane guys and hikers with dogs.


I typically don't enjoy riding when the weather is below 60*, but today was an easy exception.  My road bike is packed away for the winter.  No matter, given the shape I'm in, the mountain bike was the logical choice.    I knew I had lost fitness, my only goal was a leisurely ride up the mountain.  I wasn't looking to lollygag, but I purposefully left my HR monitor at home (I later wished I'd had it).


As noted above, the "course record" for this is around 16 minutes.   My personal best is about 27 minutes and change (near empty road bike), and the first few times I tried it on my mountain bike just getting into it was somewhere around 40-45 minutes.   Today took me 1 hour.   60 minutes exactly.   It was easily the hardest trip I've ever made up the hill.  It is amazing how decimated my fitness now is.  I had been riding regularly until early September.  I passed no one, and everyone passed me.  There was some pain, and there were definitely a few times I was ready to just turn back down.   I made it up, though.   Towards the top, it got easier.  Granted, this is a geographic phenomena on the actual hill as it flattens out, but seeing what would normally be a nothing of a sight was tremendous.

When I ride this route with my club in summer, this is our re-grouping point.  There were no one around from the club who had beaten me to the top today, in fact, no one was hanging out, but it was still nice to see.


Of note, one of the things I alluded to earlier in the blog were weird symptoms going back into summer and possibly spring.  Every ride up is timed (by me).  I worked twice as hard and twice as smart in 2009 as I did in 2008, and all summer long, my times were consistently 3-5 minutes behind 2008 times.  I wasn't sure what to make of it then, so I worked harder, but I'm happy enough to blame it on the massive lymph nodes now.


From here, on a given summer day, I may not even bother to stop and instead press on straight ahead for further climbing up towards Genesee.  On a weekend group ride, this may just be the beginning of a ride into Evergreen or to Idaho Springs and the Central City Parkway before hitting Rollinsville.   


Today, it was my finishing point, or very nearly so.   It is beyond rare that I actually bother to hit the "Observation Deck," but given the difficulty of the ride, I wanted to.   Draw your own symbolism for the ride.

My first appointment in oncology

Monday, January 11, 2010 was my first oncology appointment.  I went up directly after seeing the surgeon.  They had me double booked, but made plenty of time for me.  Although they told me to "cancel my afternoon," which I did, we never did end up starting treatment. 


It started with the standard doctor visit stuff:  height, weight, vitals.   I had in my hands my official P.E.T. scan report and printed pictures.   When the oncologist came in, I gave it to her.  I liked her immediately.  She was of good humor, but serious when necessary.  There was no sugar coating of anything.  We discussed my symptoms, some history, and she did a physical exam.   Meanwhile, Sarah was rushing from Aurora to get down for the appointment, since it was a surprise.  She got there about 30 minutes in, and then became involved in the discussion herself.


We discussed the treatment, what would be necessary and when, and prognosis/possible outcomes.  I would be getting a bone marrow biopsy that day.  I had been dreading this possibility for a month, but after a VATS surgery, the thought of it wasn't such a big deal anymore.   As noted, she was ready to treat that day, and the words "You have bad Hodgkins" came out.   However, waiting a week would not matter at all in outcome, and I wanted to pick out which day I'd be getting treatment.  The plan to treat was because she felt as though I was anxious to get going.   (Sort of).  Chemotherapy would start Monday, January 18, 2010, or in exactly one week.


Treatment plan for Hodgkin's Lymphoma is pretty standard.  The regimen used is called ABVD.  As a pharmacist, I (remarkably) knew nothing about these drugs.  Even with my 3 weeks to prepare, I didn't do much reading.   I knew they would likely cause some emesis.   At some later point, perhaps I'll detail each further, but for now, the link should suffice.    The plan is for 6 cycles.  Each cycle is a month, with drug on days 1 and 15.   (In other words, 1 cycle = 2 doses, so, I had 12 sessions of chemo planned out for me for my next 6 months).   After that, I would get radiation.  Radiation is used for "bulky" lymphoma since the drugs can only shrink so much.   The cutoff for "bulky" is 6cm, and my big node is 7cm across.   The plan for this was 20 days, minus weekends, to begin after chemo.


The chemo could wait, the bone marrow biopsy could not.  Sarah and I packed up to go into another room down the hall.  This room had a sort of bed/table on which I had to lay, face down.  I was instructed to pull my pants partway down, as the section of bone to biopsy was the top of the pelvis just around where the waist is.   After a joke or two, I was stuck with lidocaine.  I didn't enjoy it.  After the oncologist reminded me to resume breathing, she took some marrow and a small core of bone.   I obviously couldn't watch, but I experienced a wrenching sensation, which reminded me of one of those Amish-style, non-power drills.   I later asked Sarah, and she said that indeed there was a huge crank she was turning to get through the bone or draw out the marrow or something.


When that was finished, I was told to lay down on my back and some blood was taken.  Later, a nurse came in to talk a little about the chemotherapy.  She spared many details realizing how overwhelming our day was, but reminded us that on Monday (1/18/10), there would be a chemo class at 9am that we should attend prior to starting treatment at 11am.   She gave us the basics in terms of what to eat and what to expect.


On Thursday, we found out that my bone marrow was "clean."  This is important, because if the ABVD fails, one possible option would be using my own marrow for an autologous bone marrow transplant.  In the world of prognostic indicators, I also believe that this is a good one.


My afternoon was basically cancelled by this point.  I was told to go home by oncology, and not to go back to work.  I went back to my office to collect my things, and then headed off to McDonald's for some food.  In the excitement of the day, I hadn't eaten.

My story, from onset to oncology

One of the questions I get is "What were your symptoms?"  
Hopefully, this gives some backstory.


I had odd symptoms going back well into summer, but what ultimately brought me to the doctor was approximately 2 months of a generalized sickness.  It felt like the flu or a bad cold but without any respiratory (or GI) symptoms.  Shaking chills, sweating fevers, and body aches mostly in my shoulders and upper back.  I've had drenching night sweats periodically, but that goes back over 5 years.   They did increase in frequency at this point.   The fevers were only subjective, however.  The sicker I felt, the lower my temp was, something like 94*.  I thought our thermometer was broken, but Sarah always proved it reliable.


Finally, I went to the doctor in early November.
My physical exam was fairly normal.  No lymph nodes to speak of, nor other abnormalities.    So, he ordered a bunch of blood tests including blood cultures, electrolytes, CBC, TSH, cortisol, and antibody titers for an odd bacteria which had recently killed my dog.  My labs were mostly normal, but my white blood cell count was 15.2 (normal is 10.5 or less).  You can see what my white count has done since here.

Also, I had a non-specific liver test that was abnormal and a high protein.   Further tests for the protein didn't indicate anything abnormal.  All signs pointed to an infection, although my blood cultures were normal.  An ESR of almost 60, and CRP of almost 8 didn't help.  (This is how many lymphoma stories start, apparently)  So, the next step was looking for infections.  All the common "Fever of Unknown Origin" items were ruled out.  The doctors were baffled.  I was taking a lot of ibuprofen, which helped tremendously, so the idea of a rheumatological disease was being considered.   In the meantime, the doctors wanted to do a CT scan of my chest/abdomen/pelvis.  It was now mid-December.


My CT scan showed many large lymph nodes all over my chest.  The largest one was a 3 x 7 cm collection right near my heart.  As soon as the results were back, ideas of infection or rheumatology were easily dismissed.  My doctor called me with a preliminary diagnosis of Hodgkin's Lymphoma on December 18th, 2009.  He was scrambling to consult interventional radiology to see if they could biopsy the node, but it was ultimately decided that this would require surgery.


I had a V.A.T.S. biopsy on December 30, 2009.  This was an inpatient procedure requiring one of my lungs to be deflated while the surgeon grabbed pieces of the lymph node for the pathologist.  Upon finishing surgery, I had a chest tube.  Coming out of surgery, I (apparently) had a massive coughing/vomiting fit, which put a little extra air in the subcutaneous tissue, which later caused some odd sensations.   The chest tube can be seen here...

I dreaded having this taken out, but it wasn't so bad.  It was sort of weird having it, though.   I didn't sleep much at the hospital, but our room did have a great view.....

The picture doesn't do justice of the fact that I had a view of the Denver skyline with the mountains behind it.   It was even better at night, with the buildings lit up.   Luckily, Sarah brought some DVDs to watch, and we had some books.


The pathologist at the hospital couldn't be sure what he was seeing, but forwarded on my pathology specimen to the Mayo Clinic.  Pathology was specifically looking for Reed Sternberg cells. In the meantime, the surgeon was concerned that if Mayo couldn't definitively call the disease, he'd have to perform another operation to try for another lymph node.  In order to find the best possible node, he ordered a P.E.T. scan.  


The P.E.T. scan was an interesting experience.  You are injected with a radiolabeled sugar, given IV push.   If there are metabolically active cells (such as cancer cells), they'll take up the sugar, and the radiolabel will concentrate there on the picture.  So, I was taken to a nice quite room to sit and wait for about an hour or 90 minutes.  Nice wood floors, leather recliner, flat screen with ESPN, and a warm blanket, but I tried to sleep.   The scan itself is much like a CT, and took about 30 minutes.


On Monday, January 11th, the surgeon called me to definitively diagnose Stage 3 Hodgkin's lymphoma.  Mayo was willing to call the pathology specimen without equivocation.  He suggested I come by to look at the P.E.T. scan, which was then used for staging, along with the previous CT scan.  By the time I got to his office, he suggested I cancel my afternoon.  I had an appointment in oncology.

A first attempt at blogging...

I've never blogged before. I don't facebook, twitter, or myspace, and thus far, I am not even linked in. I'm not opposed to these things, I have just never had nor taken the time for these. I have read a few blogs, it is amazing what is out there.

So, why attempt a blog?

Since being diagnosed with cancer, I have been blessed with a variety of well-wishes and questions. I've also read about how journaling may be helpful for patients. I've never tried it, but this would seem to serve both purposes.

What will you get here?

I honestly have no idea. Updates on my progress, obviously. Probably a lot of random thoughts as well. It is very easy for me to wander off into a variety of topics, but I will attempt to keep that to a minimum. I am hoping to focus on my fight with Hodgkin's Lymphoma, but consider this forewarning. Over the next few days, I'm hoping to describe how I got to this point.