I gotta get me some of the sweet bell ringing gloves...

Joy of all Joys!

I am home.  I still have cancer, so that kind of sucks, but hey, at least I get a few days off to get some sense of normalcy.  I'm watching the Music and the Spoken Word broadcast that is broadcast nationally from SLC every Sunday.  Apparently this is their big New Year's celebration.  They have brought out the big guns this Sunday  and have the full on orchestra, complete with bell choir. Couple things I've noticed.

1. The mo-tab needs some fashion advice, or at least change the strategy of making all ladies look like they are dressed in a sack
2. It's pretty impossible not to look like you are having a wonderful time will ringing big a-bells. I need to get me some of those sweet gloves as well.  

Everyone is likely aware that the Tibbs clan had the distinct opportunity to have christmas at the hospital this year.  While  I wasn't able to execute on my plan of having razor scooter races around the floor, we did have a very nice Christmas.  I think we managed to maintain a sense of normalcy for brad and lucy, and even managed to have a little fun.  

I have found that there is a pesky correlation with how I feel, and how much chemotherapy I've recently received.  Right now, I'm feeling great.  Shortly after I initially received the first dose, I felt not-unlike the gum at the bottom of your shoe might feel like.  One of the pesky things about chemo, is that you never start at the same baseline.  you are perpetually starting from a starting line that keeps getting pushed back with each heat, all while hoping to maintain the same finish time you started with.  

I stumbled upon a beautiful quote from Susan Sontag:

"Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."

I now find myself using my passport to the kingdom of the sick, and, though I might never come to a complete understanding or appreciation of the particulars of my position, I find solace that there IS some appreciation to be gained from the less than fun activity.

New haircut

This was my best blue steel look after I shaved my head.  I figure once hair starts coming in clumps, its time to say goodbye.  Other that the funky moles on the side of may head I think I pull off the look pretty well.

I just finished up a stint of intrathecal methotrexate.  Today, and its now looking like I'll go home this afternoon.  Huzzaaahhhh!!!

I'll be home for Christmas......as long as we define home as with those we love

Good Day Citizens of Earth.

I thought I'd try to get a quick blog entry in before my day begins.  Not that I have a particularly strenuous day planned, Cancer has a tendency of clearing out one's social calendar, but I have some time, and some thoughts.

Things continue to go well for this LDS hospital resident.  Contrary to the designs of days 1-6 of my chemotherapy regimen, all of the important pathological counts are still pretty high.  I officially start day..... I don't know..... 10?  I'll have to ask.  I do know that I get to start probably the most impressive looking of the chemotherapy drugs I will be receiving today.  In a few hours I'll start a 24 hour push of methotrexate, a particularly nasty little chemical, that should do a spectacular number on  whatever cancer cells I have floating around my body.  I also suspect that this will also do a nice number on my counts, and my ability to grow hair on my head.  This will be kind of nice, in that I'm pretty sure I'm the only guy on the floor with any hair.  One loses credibility as a cancer patient when one has hair.

I've been able to learn an incredible amount over the past few days about my condition.  According to my doctors, I remain as unique as ever, and still defy a traditional lymphoma classification. It looks like I have an interesting mixture of the  pathology demonstrated in a Burkitt's lymphoma, but with the annoying fact that it came back, I don't really fit.  I think the terminology they are using is "Burkitt's Like"  They do feel strongly that the inability to clearly classify the lymphoma shouldn't change any of the treatment currently planned.  Since I responded so effectively the last time to this treatment, we are going to do it again.

I started reading a book recommended by my doctor (side note, does anyone else's doctor give them reading assignments?)  The book is called The Emperor of All Maladies by Siddhartha Murkherjee.  He is an oncologist who has an amazing talent for writing.  The breadth of the book is amazing.  He is distilling down the entire history of cancer, into a single volume.  I might be somewhat predisposed to be interested in the subject matter, but so far, I have been very impressed by the book.  Anyone looking for a good read should take a look.

I anticipate being a semi-permanent resident of East 8 for the next few weeks at least.  Anything past that is beyond the abilities of my crystal ball.  We have already secured some space in one of the conference rooms on the floor for Christmas.   Brad and Lucy are slated to get some sweet Razor scooters for Christmas, and I'm already trying to figure out how we are going to get away with hallway races.  Should be a holiday to remember for sure.

Every time I find myself descending into the spiral of pondering unfairness of my whole situation, I find myself immediately reminded of all the blessings that I have in my life.  I have been blown away by the support of friends and family, who have expressed a real desire to help and assist however they may.  I am reminded that I live in a place that has some of the best healthcare one could possibly ask for.  I am blessed to have the amazing and unfailing support of my beautiful and wonderful wife who makes up for so many of my own personal failings.

I might not be able to be able to be in my house this holiday season, but I'm blessed, that my home will be wherever my loved ones happen to be, even if that happens to be a conference room nestled in a corner of a hospital.

Anyone want to teach me how to knit?

I saw this today on the inter webs.  I might need to learn to knit. 

Its the end of the world and I feel fine.... well maybe a little tired

First, big thanks go to my cousin Katie who helped me with my title naming convention quandry.  Cancer update 1, 2, 3....etc just wasn't really doing it for me.  she suggested naming my posts after random music quotes.  I like the idea.   Be aware of future posts making even less sense than they do currently.

If any of you were like me you were probably up late last night waiting for our mayan alien overlords to visit us in their technologically superior spaceships and to cause the end of the world.  No?  Well me neither, I was mostly kept awake by random hospital stuff, and I'm still not smart enough to realize that there are pretty good pharmacological options to put people to sleep.

I pretty spent a pretty restless time from midnight to three, and from three to 6 watching late night cable tv infomercials.  At six I finally realized that sometimes drugs were my friend, and I was zonked.

Things go well.  They continue to watch my counts go down from the initial dose of chemo,but I still feel pretty good.  I was telling Natalie yesterday that I feel like a bit of a fraud,since I'm the only guy who still has any hair on the floor. I'm guessing I'll lose that before I know it.n in the mean time I'm enjoying the relative freedom of not having to shave.
I will have to double check, but I think my next big roundofnchemo starts tomorrow. Methotrexate looks a lot like mountain dew,but instead of being delicious,tries to kill you.  Should be fun

Update and cancer musings

Hello Denziens of the Internet!


I think Natalie is probably doing a pretty good job at keeping everyone up to date on the comings and goings on.  The past few days have been pretty good.  I finished up the last few days of cytoxin, and I've been able to enjoy a few days off from chemo.  It has been pretty drasic to see the difference that the medicine has made.

A week ago, the tumors had progressed to the point where they resembled what my doctor called "the uterus of a 20 week pregnant women"  Today, the outward physical manifistations of the tumors have pretty much dissapeared.   I'm a firm believer in the body's ability to heal itself, but I'm convinced that sometimes it needs a little help.

I think I have dialed into the right coctail of anti nausea drugs to keep me from becoming too familiar with the emesis basin, and all in all things are going well.

Last night the youth from the ward came up to visit.  They must have bought every helium baloon in a 5 mile radius.  They have made my room very festive.  They came up and sang some beautiful christmas carols.  I may or may not have shed a few tears.  It was really really nice way to spend a few minutes.  I was grateful for the sacrafice they made in coming to visit me.

This might become a theme, but I have been gratified by the sacrafices people have been willing o make on my and my families behalf.

On a lighter note:
I have managed to lose that pesky 10 lbs that I have been trying to lose so long.  So that's nice.

They like me so much, I'm going to get a room upgrade

I just found out that I am going to get a room upgrade.  They said it was because they needed a room in the Bone Marrow Transplant section for a patient who is sicker then me, but I'm pretty sure its because of my boyish good looks, and my frequent traveler status.

I haven't been moved yet, but if any of you come to visit, double check the rooom.

Today has been a good day.

Not only did I not change out of pajama pants all day toda (see earlier post about awesome things about cancer) I was able to eat and mostly keep down an entire jamba juice, a ensign brothers asiago cream cheese bagle, and a bunch of short bread cookies.

living the high life.

I finish up the initial round with Cytoxin tonight, which likely means that my stint as the peeing champion of the floor might be coming to an end.  Cytoxin does some particularly nasty things to your kidneys and bladder so they try to flush them out as much as possible.  I don't think I will be too upset not to have to wake every two hours.

The doctors and nurses have been great, as has been the support from so many friends and family.  I count myself incredibly blessed to be surrounded by so many great people..  Not the least of whom is my amazing and beautiful companion Natalie.  I can't imagine being able to do this a second time without her.  I've been listening to a lot or random music, but this song reminds me of her:
The Killers: Prize Fighter

"When it comes to tight rope walking, She's world renowned....... she works 268 hours a week, I wait to meet her match"

Love you baby.  

I'm going to be your prize fighter.

The update

I sit here nicely settled into my room on East 8 of LDS hospital.  They have made some nice improvements since the last time I was here.  As I write Chemotherapy is slowly dripping into my veins, and despite this, I cant help but feel incredibly grateful for all of the love and support that has been shown to me and my family.  It has been overwhelming to see the numbers of people who have expressed their support and willingness to assist.

The doctors have yet to come to a definitive conclusion as to what exact type of cancer I have, but we did conclude that in the scheme of things, it really didn't matter that much, and treatment is the treatment regardless of the type.  We are going to proceed with a very similar treatment that I received 9 years ago.  In oncological speak its called CODOX and consists of a number of different chemotherapy agents given in varying doses at varying times.  It is known to be very effective in combating high grade lymphomas, and I can say that it has a 100% success rate with me

The downside to codox is that it is pretty intense, and it seems pretty likely that my stay in the hospital will be a little longer than I wanted. So much in medicine depends on a number of variable factors, so no one can say definitively how long I should expect to be here, but it seems safe to assume that 7 days is pretty safe bet.

Even thought my life has been turned upside down I can't help but feel gratefull for the good people that fill my life.  Perhaps it takes something like this for us to recognize the good that surrounds us.

Post in which I inform you of a short term change in address

Doctors apparently don't like messing around.  We got the results back from the pathology report.  The good news is that the cancer is pretty much the exact same thing I had 9 years ago, but this time around there is some controversy as to what that actually is.  For better or for worse a bunch of oncologists are trying to determine how to classify the cells. 

The other piece of news is that regardless of the final classification, my doctor feels strongly that its a good idea to start treatment as soon as possible.  In a few hours I'm supposed to check myself into LDS hospital to get the party started.  They said I should plan on being there about a week. 

Musings while receiving an echocardiogram

So one of the slew of procedures I get to have in preparation with my face off against chemo is an echo-cardiogram.

Essentially they use an ultrasound to look at your heart.  I made some observations.

1. Ultrasounds look pretty much the same regardless what part of the body they are of.  I swear the ultrasound of my heart looked pretty much exactly the same as the ultrasounds of my two children before they were born.
2. I lose interest pretty quickly when I can't figure out what's going on.  The tech was really nice, and was trying to give me a play by play of all the things she was seeing.  To me it was a bunch of squiggly lines that I didn't really understand.  I think I fell asleep a few times.
3. Ultrasound gel on your nipples doesn't feel as good as you'd think it would.

As far as I could tell everything looks to be as it should, so that's a nice thing.

Top Ten Best things about having Cancer

While there certainly not a lot of cool things about having cancer, There has to be some.  I tried to come up with the top ten.

1. Bald Heads are Cool
2. Who needs eyebrows?
3. Great excuse to buy and wear more hats
4. Effective way to lose weight
5. "I have Cancer" is a good excuse to get out of pretty much everything.  
6. Handicap parking pass
7. Chemo brain gives you a good excuse to not remember crap.
8. Cancer is a good excuse to always wear pajama pants
9. You get to expand your vocabulary with cool words like "Severe mural thickening" and "methotrexate"
10. Cancer is a great, albeit, morbid discussion topic at parties

More information than you care to know about lymphoma

So I spent the good portion of last night browsing Lymphoma on wikipedia.

I think my favorite part of the article was at the very beginning where it said:
This article is about lymphoma in humans. For the disease in dogs, cats, and ferrets, see lymphoma in animals.

Wikipedia is awesome.

In any event, I thought you might want to peruse the wealth of information contained there.

http://en.wikipedia.org/wiki/Lymphoma

also I really like this infographic:

Welcome to Joe's Cancer Adventure

If you are reading this, there is a good chance that you know who I am, and have a good understanding of what I am currently going through.  If you don't know a guy named Joe who gets to have awesome cancer adventures, you are probably reading the wrong blog.

I thought it might be a good idea to find a place where I can communicate some of the ongoing awesomeness that is cancer treatment, and to maybe help myself keep a record of what happens during the course of this treatment.

If the last time I was diagnosed with Non-Hodkins Lymphoma 9 years ago is any indication, the mind does a good job in blocking out the more horrible portions of the treatment.

I suppose the goals for this site are three fold

1. Provide a mechanism by which I can communicate the comings and goings of my treatment to a wide range of people
2. Give me an outlet to record some of my thoughts and actions during this difficult time
3. Keep my brain occupied so it's not dwelling on the negative.  

We'll see how well I do any of those things.

In any event here is some background.  I presume most of you already know many of the details.  9 years ago I was finishing up treatment of what the oncologists were calling "burkitts like" non-hodkins lymphoma.  The treatment wasn't really a walk in the park, but it did give me the opportunity to become intimately familiar with our nation's healthcare system. I had successfully beaten cancer this time, and was able to live some of the best years of my life.  Against the odds, I was blessed with two amazing children, I already had an amazing wife, but the subsequent years were some of the best we've had.  The time has been amazing.

On Thursday December 6th 2012  I had gone in for a CT Scan.  Since the last cancer run in I have learned it's probably better to be proactive then reactive.  I was just about to get on an airplane to New York for a fun weekend with the Family, when I heard from my doctor that trip just wasn't in the cards.  The CT Scan had some concerning and abnormal results that led the doctors to believe I was in no shape to fly.  I ultimately proved them wrong, but still ended up undergoing the excitement of preparing for a colonoscopy in lieu of hanging out in the big apple.

Today I officially met the oncologist.  Like most crazy smart people I know, he had some interesting quirks, but all in all I think that he's going to be a good fit.  He told me that if he didn't know something, then he would tell me.  This is a pretty significant departure from my past experiences that suggested Dr's thought themselves infallible, and took offense if you indicated otherwise.

We are still waiting on final pathology reports on the samples taken from my tumors yesterday, but the doctor is 99% positive that I do, in fact, have lymphoma.  The exact treatment will largely depend on the pathology reports, but he felt sufficiently motivated to get me started on the other barrage of tests that will be needed to type, and stage my cancer.  Once we have a good understanding what kind of cancer I have, and how far it's spread, we will have a much better understanding of what the treatment will look like.

2012 is quickly becoming a very expensive healthcare year.
Colonoscopy+Pet Scan+Echocardiogram+ChemoTherapy= no new toys for Joe this year.

I still remain confident that I'm going to kick this thing.  I haven't quite decided if having experience in this regard is a good thing or a bad thing.  On one hand, I have a good idea of what to expect.  On the other hand, I have a good idea of what to expect.

I don't think I'm very good at being pessimistic, and I don't see how now would be a good time to start trying to be.

My great thanks go out again to all those who have expressed their support.  It really does help tremendously to know that there are so many who love and care for me and my family.