Thoughts on Cancer one month post treatment

In some ways it's hard to believe that it has been more than a month since I received the last dose of chemotherapy.  I suppose all of the signs are there,  I've finally started growing hair again, I'm told that I have color back in my cheeks, I can walk up stairs without getting too winded, and I have had to resurrect my relationship with my razor.  Cancer apparently isn't all bad.  I used to dream about not having to shave for months on end.

In other ways I've found that the experience is all too present in my mind, and in my emotions for me to truly be comfortable.  There was a period 9 days or so a few weeks back that were pretty traumatic.  I remember leaving the hospital on my last day of treatment the end of February ready to be done.  I was ready to rid myself of doctors, of chemo, of at least some of the uncertainty.  As the days drew on, I was feeling confident.  Before the doctors were to officially declare me "done with treatment" they scheduled yet another PET/CT Scan (I've gotten very good at these scans, and I'm pretty sure the radiology department knows me by sight).  The 18th of March was the big day.  I was feeling confident.  I had a scan about a month before, and that came back clear, AND that was before I completed the 3rd and 4th round of chemo.  I figured if we couldn't see anything after round two, what were the chances of seeing anything after round 4?  Apparently I was misinformed.

The procedure was everything I expected.  I dressed in a slightly immodest hospital gown, drank some pretty nasty tasting contrast, was injected with radioactive sugar, and waited.  The scan was fine.  I was done, got dressed and went to work.  I was justifiably surprised when I received a call from the bone marrow transplant unit later that afternoon asking me to come up to the hospital for an ultrasound. They explained that the radiologist noticed some suspicious activity in my jugular vein that was indicative of a deep vein thrombosis.  Crap.  I did what anyone with an internet connection would in this situation and googled the heck out of  DVT.  Double crap.  this seemed like kind of a big deal.  I diligently made my way to the hospital and went up to the ultrasound department.  I'd evidently gotten there after closing hours because the lights were dark and I had to be escorted through darkened hallways.

The ultrasound confirmed the findings.  I did in fact have a thrombus sitting a few inches from my brain, and a few inches from my heart.  In my mind, this was not the best news I had ever received.  I went back up to the BMT Clinic where they gave me a shot of some high dose heparin to treat the DVT.  Speaking to them, they didn't seem all that concerned about the DVT at all.  Maybe the internets were wrong?  I decided to trust their judgement and try not to worry.

A day or two later, the news got a little more problematic.  The official radiologist report came back, and the radiologist noted some ares of concern on the PET and CT Scans.  When reading the report the words "areas suspicious for Lymphoma activity" are not things you want to see.  What happened to the completely clean scans from only a month before?  I think our entire family reverted to survival mode.  It was hard to plan anything further than the next 24 hours.   The uncertainty was debilitating.

We had originally scheduled our post treatment conference for the friday following the scans.  Given the new information, Post Treatment was probably off the table, but I really wanted to have the meeting to try and get some more information and hopefully more context from the results.  I decided to focus on what I knew first, so I asked initially about my DVT.  "I'm not at all concerned about the DVT" was the Dr's response. The answer was somewhat surprising to me, cause I sure was concerned about the DVT.  The internet was full of some pretty gnarly stories about this thing, and it seemed like a big deal.  It's a good thing that I had a pretty high opinion of my doctor.  I think this helped ease my mind about the one thing that I knew I had.

After facts were out of the way, I entered into the realm of complete speculation.  "What's the likelihood of a false positive on the PET?"  Answer:  "False positives happen fairly regularly, and we'd never treat based on the PET results alone."  Whew.  "What are next steps?"  Answer:  "Colonoscopy in 4 days to get biopsies to confirm or rebut the scan results"  Really?  Another Colonoscopy?  By this time the Doctor was getting way too familiar with my insides, but if that's what we need to do, what's one more camera?  My final question was "Assuming worst case scenario, and it did come back, what should I prepare for?"  The Dr's answer demonstrates why doctors will never be hired to work in advertising.  He responded that the next step would be to bring me back in for "Salvage Chemo"  and then an allogeneic bone marrow transplant ASAP.  Can you think of a worse sounding name?  It sounded like I was a broken down car on it's last legs who was just about to be taken to the junkyard.  Horrible name.  Natalie and I started to brainstorm better names than "Salvage"  I think my personal favorite was "chemo EXTREME"  you had to say chemo in your normal voice, but yell the EXTREME Part.  For some reason the thought of doctors and nurses having to raise their voice in describing the regimen mad me smile.

Happily, all of the worry, the speculation, and the sleepless nights were for naught.  The colonoscopy came back yet again with absolutely no indication of lymphoma, and the GI Doctor was even able to articulate a medical justification for why the scan might have come up with a false positive.  All was right with the world again.

I now find myself feeling increasingly confident that we have this thing figured out.

I sometimes joke with natalie that I have two superpowers.  The first is my impressive ability to keep and grow my eyebrows even in the face of aggressive chemo,

the other is my ability to rationalize, forget and all around fool myself into seeing and remembering the positive.  I've found this has been a useful skill for cancer patients.

Despite my natural optimism, I've been struck by what appears to be the patent unfairness of cancer.  Cancer is no respecter of persons.  It doesn't care who you are, your age, your background, or your situation in life.  Recently I've heard of a number of people who are close to me who are likely going to be forced to experience trials similar to those I recently passed through.  My heart hurts for them.  I don't know if there is anything that can truly be said to ease the difficulty of the coming months, but for me the words of Elder Henry Eyring, a leader in my church, provided me significant comfort, even though I cry like a baby when I hear them.

Sometimes we are given mountains to climb.  We should know that we have divine assistance in climbing them.

Score So Far: Joe 2, Cancer 0

It's hard to describe my experiences over the past few months.  Cancer is such a loaded term with many meanings to so many different people, that saying, "I have cancer"  isn't really a good descriptor of what I actually had to go through.  On the other hand, getting overly technical isn't very effective either.  Most of us aren't really equipped to have a discussion about the finite differences between a"Diffuse Large B Cell Lymphoma with a proliferative index >95%, and a more understandable, Burkitt's Lymphoma.  A conversation about the specific origins of a chemotherapy agent, or the specific genetic mutations that contribute to my disease, I've found, are a good way to make people bored with the conversation, or make them wish they paid better attention during high school science class.  

I'm a firm believer that there is very little in life that can't be made better with a sports analogy, so for the past few weeks I've been trying to figure out what the best analogy would be.  Baseball???  kind of like cancer in that you spend a long time waiting for a little bit of action.  One could probably say something about how both baseball and cancer are nearly impossible to explain to someone who has never played the game.  have you tried to explain baseball to someone who's never played.  "so there is this guy named the pitcher, and he throws a ball to a batter, who tries to hit the ball.  He get's three chances or he strikes out.......  It's complicated.

I tried coming up with an analogy about cancer and ice skating, but slipped. (did you see that pun there?) 

I finally settled on an analogy between cancer and a boxing match.  In the imaginary boxing match of Joe vs Cancer, the score so far appears to be Joe 2.  Cancer, 0.  This isn't to say that cancer didn't get some good punches in.  At the end of this most recent match cancer took a fair amount out of me.  I'm 34lbs lighter now than when I started.  I have a distinctly bald head, and even my impressive eyebrows have started to thin out.  I think I have the strength of a 12 year old girl, and some ongoing tingling in my fingers and toes.  In what appears to be cancer's final blow to the midsection, I found out today that I have a Deep Vein Thrombosis embedded near my jugular.  Nothing too serious, but it does mean that I get to be on blood thinners for a lot longer than I originally anticipated.  Interestingly, the DVT was found today when I went in for my Final CT scan.  

I've had to cancel my knife fighting classes that I had scheduled, as well as cancelling my bouts as an ultimate fighter.    Touche cancer.

Despite having been put through the ringer in this latest bout, I can say with elation that I think I whooped this thing.  

I'm very happy to say that not only was I able to do this almost a decade ago, but I was able to do it again.  

Joe: 2                    Cancer: 0

The bell appears to have rung in this most recent round, and I appear to be the victor.  I'm hoping that I will be able to hang up my gloves and retire from this fight for good.  

Without belaboring the analogy too much, I will say that this whole endeavor would have been much more difficult without the numerous people in my corner.  I don't know a lot of people who have the ability to compare cancer experiences within themselves, but I can definitely say that this cancer has been waaay better than the last cancer.  I think a lot of that has to do with the amazing support system that has been there to help me and my family.  My sincerest thanks go out to each of you.    

I'm not sure what this space is going to become in the future.  I anticipate that in the short term there will still be some cancer related stories and news that I might want to share, but long term.... who knows.  I've found that I have liked writing this blog, and I've heard that some have found it entertaining if probably not that informative.  If I were less lazy I'd take up blogging as a hobby and use it to hone my writing skills.  I am lazy though, and therefore, unwilling to commit to anything.  Maybe I'll find something compelling to write about and that can fill this space.  We shall see what the future holds....

Newsflash: Bodies need red blood cells.

This is probably pretty intuitive, but I've found that our bodies (or at least mine) operates way more effectively when it actually has a decent number of red blood cells.  I went into clinic yesterday for what I planned on being the final drug in the final round of treatment.
Clinic visits generally follow the same basic schedule.  I check in on the fancy touch screen.  By the time I sit down the phlebotomist pops her head out the door and calls my name.  They are impressively fast.  I go to the little room, step on the scale.  They do everything using the metric system, so yet again, I berate myself for not doing better at knowing what 99.82KG actually means, and recommit to start using the metric system more.  Really America?  you want to be the final holdout using the imperial system of weights and measures?
I usually reminisce briefly on how much pie I would have to eat to get back up to my starting weight (it's a lot!), and then I think how nice it was that I had so much extra padding going into this thing.
I sit down in the blood drawing chair, and make some small talk while they draw numerous vials of blood.  Somewhere in there I have to confirm that I am who my wristband says I am, which I find somewhat interesting since I'm on a first name basis with pretty much everyone on the 8th floor at LDS hospital by now.
Once labs are drawn, we wait.
With cancer, waiting is something you get really really good at.
Yesterday, we waited.  The labs came back, and it shouldn't have come as a huge surprise to me that pretty much all of my counts were really low.  I was just at the threshold to get red blood cells and platelets.  My white blood cell count was at 0, which coincidentally I found irritating because I've been getting a shot every night to stimulate white blood cell production.  If I'm going to go through the pain of a shot, I better get the gain of increased white blood cells.  I felt kind of cheated.
Lance Armstrong showed how effective blood doping could be in a professional athlete, so it must be just as effective in a cancer patient right?  I took a page from lance's book and we ordered up two units of blood, and some platelets for good measure.
Remember when I said that cancer makes you good at waiting?
This little shift in treatment changed our planned 2 hour long clinic visit into a 8.5 hour long marathon of sitting around.
By the time we left, I had received my scheduled final dose of rituxamab, two units of blood, a unit of platelets, and some cafeteria nachos that sounded waaay better in my head then they tasted in real life.
I am happy to report that things are progressing well.  The red blood cells have made it so I can go up my stairs without being winded, and put some color in my face.  (I'm told pale is not a good look for me).  I have officially completed the drug treatment portion of my regimen.  I think today is day 11 of the 21 day cycle, so technically I have 10 more days to go.  From this point forward, as far as I can tell, most of my activity is tied to recovering from the first 6 days of the cycle where they gave me large doses of poisonous chemicals.  I am optimistic that  soon will be the day where I can lose some of my waiting abilities, and get to a normal that isn't dominated by cancer treatment.

This is what a guy on his last day of chemo looks like

Not sure why I chose my dramatic face.  Pretty sure I wanted to accentuate the fact I still have eyebrows.  I think the ability to grow and keep luscious eyebrows might be my super power.

Last round has begun

DA DA DA DUM!!!!

This cancer is way better than the last time I had cancer....

I'ts been far longer than I intended since I last update this blog.  I imagine that one of the sad truths about a blog devoted to one guys fight with cancer, is that the longer between blog posts could be really really good, or really really bad.

This time, the length between posts was mostly a good thing.

For those keeping track of such things, I got out of the hospital on the 13th of February.
Cancer did not disrupt my ability to plan and execute uninspired and mediocre Valentines festivities.  Good to know that some things don't change.

Right before I was released from the hospital
(point of clarification:  what's the best terminology for leaving a hospital after a medical stay?  Discharge connotes to me some sort of military service or mission completed.  It also has a not so pleasant medical connotation.  "release" seems to connote a lack of personal say in the decision.  Although, the more I think about that, the more that seems to fit. I digress,)

In any event, right before I left they gave me my least favorite chemo drug.  Nice thing about round  three, is you get to have a pretty good understanding of what's going to come.  Friday, Saturday and Sunday were pretty much horrible, at least by modern terms.  I suppose were I to compare sunday to the average day of a medieval peasant during an outbreak of the bubonic plague, my weekend wasn't that bad

Here is the top rated search for medieval peasant on google image search.  I don't know what a liripipe is but I think it should be 2013's new fashion trend.  Also, your welcome for the picture of the peasant.

So the weekend was pretty miserable, but all storms blow themselves out in the end, and it appears that I am departing the sea of the sick headed for the harbor of the well.  I don't anticipate being docked in the harbor for very long.  I will check back into East 8 this Friday the 22nd.  This will hopefully my last admission for a very long time.  I should start round 4 of chemo on the 22nd and the chemo portion should last about a week.

I remember about 1% of the conversation I had in 2003 when I was diagnosed with cancer the first time:
Dr Nielson: "Blah Blah Blah, Non Hodkins Lymphoma, Blah Blah Blah, as far as Cancer's go, it's a good cancer to have"

I'm can't really say that I'm happy to be doing this again, but looking at all of the billions of potentially worse situations, maybe my cancer isn't such a bad cancer to have.  I probably couldn't have said that looking into starting round 1. Entering round 4 is making me optomistic.

Comedic relief

Watch "Scrubs - Everything Comes Down To Poo" on YouTube

After being poked and measured and analyzed 100 different ways I thought this was pretty funny.