On Unfortunate Anniversaries

Three years ago today, I found myself reeling from some very unfortunate news.  I was scheduled to go on a fabulous four day vacation with my wife and son to the big apple, where I was planning on eating to excess, spending ridiculous time at museums, and generally creating lasting memories.  

Instead of spending the night here:



I got to spend the night here:



Both locations have high levels of service,  and you'd likely be equally shocked by the bill, but I think that most people would prefer the former over the latter.

I don't know if I'm ever going to forget the panic that gripped me as I was waiting to board my plane to NYC when my physician confirmed my worst fear.  "Joe, Your cancer looks to be back"

Fast forward three years, (spoiler alert, I did end up beating that cancer thing).  I now find myself celebrating a somewhat unfortunate anniversary.

Almost three years ago to the hour, I found myself a reluctant inhabitant of LDS Hospital's East 8.  Three years ago, my life changed, drastically, dramatically, and in ways that continue to affect me today.

Every year, I find myself in a similar situation, the holidays will forever be bound to that time in my life where I stopped being regular Joe, and became Cancer Patient Joe.  What does one do when faced with an unfortunate anniversary?  What does one think of when little holiday traditions remind one of memories preferably forgotten?

I don't know if I know the right answer to those questions, but I can say how I do tend to respond, because like it or not, it appears that I'll be celebrating an unfortunate anniversary for hopefully many years to come.

I tend to deal with this unfortunate anniversary with trying to downplay memories of the fear, the pain, the uncertainty, and by trying to emphasize the memories of the amazing caregivers, the friends and family who gave such incredible support, the positive lessons I learned.

I hug my kids a little tighter, tell my wife I love her, and I find myself trying to be a little more grateful for every single day.

It might not be a cake, or flowers, but at the end of the day, it's not a horrible way to commemorate an anniversary.

Happy One Year Chemo-Versary!

The picture on the left was taken on my last day of chemo on February 26th 2013.  The picture on the right was taken February 25th, 2014.

What a difference a year makes.

Christmas ruminations and Giving Back

It's kind of funny, I don't know if I would ever call myself the journaling type, but looking at the posts on this blog, and the various posts on facebook by both myself and Natalie, and by golly, I've got a half way decent record of the 46 days spent in the hospital starting just over a year ago.

As you would imagine, hitting the 12 month anniversary of an event that drastically altered my existence has been somewhat emotional.  My current outward appearance belies the difficulties of the past year, but inside, I can certainly say that cancer has changed me.

I think for the most part it has changed me for the better.  I'm still trying to quantify those changes, and document them for myself in an effort to see that the benefits gained from a brush with ones own mortality are not lost.

Perhaps its the confluence of the season and the one year diagnosis anniversary that has caused me to reflect significantly on the season.  I recall that last christmas was spent with poison being infused into my veins, so it was somewhat difficult to get any reflecting done.  This reflection has allowed me to gain what I am sure is a limited understanding of the enormous blessings that I've received in my life.

Occasionally people will say hello and ask how I am doing, and I've historically answered, "It's good to be Joe Tibbs"  That answer might have been slightly sarcastic, but as I've thought, I've got to say, that it really is good to be Me.  Other than the whole cancer twice thing, I'm as healthy as a horse.  I've got a great family, a good job that I enjoy, and more friends than I probably deserve.  In addition to this, the recovery from the 4 months of receiving chemo has been surprisingly quick.

The first time I underwent treatment 10 years ago, I came out on the other side of chemo weighing 165 pounds, limited feeling in my toes, and requiring a cane to walk without a perpetual faceplant for 6 months.  This time, my toes feel great, I can go up stairs without getting winded, and 6 months after treatment I was able to go on a 40 mile bikeride up a big hill that certainly wasn't designed with the cyclist in mind (hills are not the friend of those of us carrying additional baggage).  I'm grateful for that.

I'm grateful that I get to spend this Christmas holiday in my house, and not in my hospital bed.

I'm grateful for good friends who showed such amazing support for me and my family during an incredibly difficult time.

I'm grateful for an amazing wife who kept everything going when I was only focused on getting better.

I'm grateful for amazing doctors, nurses, and other medical professionals who made cancer II easier than cancer I.

As perverse as it seems, I'm even grateful that I have to shovel my own sidewalk after the recent snowstorm.

I suppose the logical extension of this feeling of gratitude is a sense of responsibility to try to contribute in some small way to humanity, to try and pay back some of the blessings that I've received.  I recognize that I will never be able to come close to compensate for the things that I have, but I think I'd be remiss if I didn't at least try.

Along these lines, Natalie and I chatted some months ago about maybe doing something to support the Leukemia and Lymphoma Society.  LLS is one of the major cancer related charitable organizations in the world whose mission is literally to find a cure "for Leukemia, lymphoma, Hodgkin's disease, and myeloma, and improve the quality of life of patients and their families".  Not only is the Leukemia and Lymphoma societies one of the most effectively run cancer charities in the country, I was the direct beneficiary of their programs and services.

One of the major differences between cancer I and cancer II was the addition of a drug called Rituxan.  It was one of the first drugs that I received in the most recent treatment, and was amazing in it's effectiveness.   The research that led to the development of this amazing pharmaceutical was funded by funds raised by LLS.   I certainly feel slightly indebted.

So with this indebtedness, we thought that we might get a team together to participate in Light the Night, a festival like fundraising activity that takes place in late summer.  Plenty of time to plan right?  Imagine our surprise when at our last clinic visit we were asked if I'd be willing to participate in the Man and Women of the Year Competition. This is one of the three major fundraising campaigns put on by LLS, and involves various individuals in the community being nominated to be the Man or Woman of the year.  During a 10 week period candidates work to raise as much money as they possibly can, with each dollar raised counting as a vote.

Now, I'm not sure I have much interest in the title of Man of the Year, or that I'm particularly good at asking people to donate things, but I'm certainly passionate about cancer treatment, and to the extent that my work might help someone who is diagnosed with this disease in the future be able to cope more effectively, or have a treatment that works better, I'm all in.

So, friends, I formally announce that I've accepted the nomination to be the 2014 Leukemia and Lymphoma Society-Utah Chapter Man of the year.  I've committed to work to raise as much as I can in the fight against these horrible diseases.  The campaign won't actually start until February 11th, but I think it's a really good idea to start thinking and organizing now so I can be as effective in those 10 weeks as I can.

One of the other ways that cancer II was so much better than cancer I, was that cancer II was treated using a team approach.  It was amazing what was accomplished when a team of impressive people worked together to accomplish a task.  I think the same principle applies to the MWOY campaign.

If any of you have any inclination to help me in these fundraising efforts, please, please, please, let me know.  I certainly will need all the help I can get.


Here is some information on LLS.
Here is some information on the Man &Woman of the Year Campaign


Over the next few weeks, I'll be working to identify people who will be willing to be on my fundraising team.  If you have the inclination, I'd greatly appreciate your support and involvement.

On Thanksgiving and Banana Cream Pie

Like most of you reading this post, I am just now recovering from a bit of a food coma brought on by the gluttonous indulgence that is Thanksgiving.  What a great day. Thanksgiving has always been one of my favorite holidays.  For me, any day that is marked with delicious food, and almost no obligations other than to get along well with your extended family is a good one.  I like it so much that I tend to extend thanksgiving over a few days.  As much as I like getting together with family to consume the quintessential thanksgiving bird, I can't seem to shake the idea that it doesn't really count till I've made a turkey of my own.  For the past few years, I've participated in my extended family thanksgiving festivities as well as having my own mini thanksgiving feast.  Needless to say, my turkey consumption this weekend has been prodigious.

As I have participated in this week's festivities, I can't help but be reminded that I have a fair amount to be thankful for.  I have a beautiful family, great friends, good job, and the luxury of having thanksgiving dinner two times in a week.  It's pretty dang good to be me.

If you were to look at me now, you'd probably have no idea that just 12 months ago, I had a hyper aggressive tumor starting to grow inside me.   I am incredibly lucky to have no long lasting effects from this most recent treatment.  The first time I went through CODOX, I lost most of the feeling in my toes, and couldn't walk well for almost a year.  This time, no residual effects other than a couple new interesting scars.  For the most part, if a person were to meet me on the street they'd have absolutely no way of knowing the difficulty of the past year.

Even I do a good job at ignoring the difficulty of the past year.  I think at times I am able to think of my stint with lymphoma as something that happened oh so long ago to a person very different than myself.  There was sick Joe, and there is healthy Joe.  Healthy Joe and Sick Joe don't talk very much.

I sometimes worry that Healthy Joe will forget some of the lessons that became very clear to Sick Joe.  Sick Joe learned that there were very few things in this life that couldn't be overcome with the help of our Father in Heaven.  Sick Joe learned to enjoy the amazing things in his life, and be grateful every day for life's tender mercies.  No vomiting today?  Reason to celebrate.  Walked 5 laps around East 8?  Have an extra serving of dessert, for today was a good day.  Had to spend Christmas receiving methotrexate that mad you feel like the gum on the bottom of someones shoe?  Could be worse, you could be spending it in a coma a couple floors down.

Sick Joe learned all of the amazing people he has in his life.  From his amazing wife and companion who suffered much more than he, to the multitude of people praying for him, and helping him in whatever way they could.

Sick Joe learned to appreciate the fact that you might never be able to control what life has in store for you, but you always have the ability to control how you respond.

Sometimes it's hard for Healthy Joe to remember these lessons.

Today, my family and I were finishing thanksgiving dinner part 2.  I had spent most of the day grilling a turkey, making substantial quantities of mashed potatoes, and preparing the dinner table for another thanksgiving meal.  The food was satisfying, and the company was good.  I was content.

As I looked over the counter top to see what we had for dessert, I noticed a pristine banana cream pie made by and given to us by a dear friend and neighbor.  I think the last time I had a banana cream pie was just less than a year ago when it was one of the few foods that retained any appeal.  I had been directed by my physicians that I eat whatever sounded good in an attempt to keep weight from dropping too low.

For reasons I don't quite understand, Banana Cream Pie was one of the few foods that always sounded good.  There were day's where I'd have a slice of pie for breakfast, lunch and dinner.  If I were to continue that habit, I'm sure it wouldn't be good for me, my wardrobe, or my waistline, so I stopped.

Tonight, I helped myself to a slice of banana cream pie, and it was delicious.  With the taste, came a number of memories of those times when I ate more for the calories than I did for the taste.  The lessons that were so clear to Sick Joe, became a little more clear to Healthy Joe as well.

I've always had much to be thankful for.  I'm thankful that I'm well again.  I'm thankful that I've been blessed so abundantly.  I'm thankful for the ability to be healthy Joe again.  I'm thankful for the lessons that sick Joe was able to learn, and I'm thankful for banana cream pie to make me remember those lessons on occasion.

Looking Back, Looking Forward, Figuring out how I've changed

I have found myself recently reflecting on the wonder that is not being injected with poison every other day.  It's pretty amazing how quickly your body can recover when its not constantly barraged by hyper therapeutic doses of chemotherapy.  

I think I'm still trying to figure out what post-cancer Joe looks like, physically, I think I've figured it out, slightly larger than necessary, a lot more hair than cancer-Joe...  but intellectually, emotionally, spiritually?  I think the jury's still out.  

 As I've been pondering, I stumbled on a couple of pictures that I found incredibly interesting.  I realized that both the first time, and the second, documenting treatment for posterity wasn't real high up on anyones list of priorities.  Looking back, I wasn't entire confident that I was going to have a posterity the first time around, so taking pictures never really crossed anyone's radar. 

Even though I spent 96 days in the hospital fighting my first bout of lymphoma, I think this is the only picture I have of me from those days looking like a cancer patient (I do have pictures of the inside of my colon during those days, but this is a family blog, so I'll abstain from posting those).  

This is me shortly after completing the last round of Chemo from my first stint with NHL.  I weighed 165 lbs, couldn't feel my toes, and had a really hard time walking without stumbling.

The second round of lymphoma was similar to the first, especially in my propensity not to take many pictures.  Even though I had a camera (posing as a cell phone) with me almost all the time, the number of pictures taken during this recent bout was pretty minimal.  I've commented that the more recent cancer was way better than the first cancer, and looking back I was right.  Not only did the treatment seem to have fewer complications, my personal network had grown significantly.  I was amazed at the outpouring of love and support from a huge number of people from all aspects of my life.  Thinking on going through treatment without the help I received from friends and family still makes me shudder.  

This is a picture of me the day that I was set to receive my last inpatient dose of chemo therapy.  I could still feel my toes, I had lost 30 lbs, but I had at least that much to lose, and I avoided getting any horrible infections in spite of a significantly repressed immune system.  Other than the shiny head dome- I don't look that bad.

Fast forward a mere three months after the last round of chemo, and this is what I look like.  Again, I think I look a lot better because I have a ridiculously attractive family that makes me look better than I really am, but overall, I'm amazed at how fast I have recovered.

This picture was taken in June of 2013.  Looking at me, you'd never have guessed that I spent the better part of the winter a resident of the cancer ward. I think the fact that I have a beautiful family helps me look a bit more attractive than I really am. 

If you were to look at me now, you'd probably have no idea that at the beginning of the year I was sporting a cancer induced aerodynamic haircut. 

I recall being told that the best way to enjoy a watermelon, was right out of the field, with a shaker of salt.  Salt?  That's crazy.  Intuitively, that made no sense to me.  I couldn't figure out how two seemingly opposite tastes couldn't clash.  When I finally got around to it, I found that it is, in fact, very very good.  There's something in the contrast that sharpens the taste, and makes it all the more delicious.  

Cancer is one of life's salty pills.  If you are lucky to come out on the other side, your taste buds are altered so you notice life's sweetness with greater clarity.  

Looking forward, I hope to continue to have clarity to appreciate life's wonders.  I hope to continue to be grateful for the things I have, and to recognize the blessings I've been given.  I hope to live my life fully, to love more, to worry less, to be more caring to those around me.  I hope to remember that life is precious, fragile, and somewhat fleeting.  

If I'm able to overcome my own propensity to forget, and remember these lessons, I suppose that the trial that is cancer will be a small price to pay.   

Moving Forward....

Do you ever find yourself with a list of things to do, but with zero motivation to do them?  I find myself in that position right now.  My brain seems to suggest, "hey, you have a gazillion things to do?, how about instead of doing them, you take the time to write a blog post"  My will is weak, so here I am.

I've been thinking a bit about the future state of this blog, and what I intend it to do.  I can't say that I've really come up with an answer yet, but I think it's apparent that I'm not entirely finished with it.  It is somewhat nice to have a forum to write some of my thoughts and observations.  I don't write as much as I probably should, but I do find it somewhat therapeutic.

Since this blog started as a mechanism by which updates could be shared with friends and family regarding my most recent bout with Cancer, I think it fitting that I provide an update as to where I am at now that I'm officially done with treatment.  One of these day's I'll get around to taking some sort of before and after shot, but in the short run the picture below was taken with my beautiful wife while waiting in a ridiculously long line last week at Universal Orlando.

The attentive observer will notice that I've got some nice fuzz growing at the top of my head.  I think I have a pretty round head that is fairly well suited to being bald, and I know I've probably saved literally TENS of dollars in foregone haircuts, but I have to say that it's pretty exciting for me to have to worry about haircuts and shaving again.  Its a physical manifestation that I'm recovering from the incredible amount of poison pumped into me, and I'm pretty grateful for it.

I had a clinic visit today where I had some really nice conversations with some of my doctors, nurses, and healthcare professionals that have made this most recent journey a little bit more bearable.  The good news is that I'm doing pretty dang well.  All of my counts are within an acceptable range, and I don't seem to have any lingering side effects from my treatment.  I also found out recently that I have a 100% bone marrow match in one of my brothers.  In the event that my cancer comes back soon, the next step would be more chemo, and then a full on allogeneic bone marrow transplant.  I sincerely hope that it never gets to that point, but it is extremely comforting to know that there are options available in the event worst case scenario becomes a reality.

One of the things I was discussing today was the inherent difficulty that comes from being a cancer patient whose cancer is difficult to classify.  I'm essentially a sample size of one.  This makes it horribly problematic in determining course of treatment, and clinical efficacy when there is essentially no one else to compare yourself to.  There aren't any satisfactory clinical studies, or any journal that was going to address the specific needs related to my illness.  I was never going to find solace or fear in mortality statistics because there was no way to determine if those statistics were ever going to apply to me.  This is kind of frustrating for a guy who likes to understand and weigh his options.
I was speaking to one of the coordinators at the LDS Hospital Bone Marrow Transplant Unit during my visit today about living with the uncertainty of being a sample size of one.  I asked her if she had any experience with other patients who have had experiences similar to my own that would force them to become accustomed to high levels of uncertainty.  She responded that all patients to some extent are forced to deal with the uncertainty associated with their illness.  Nothing ever goes back to normal once an initial diagnosis is given, but, she assured me that almost everyone finds ways to cope.

I think that's one of the beauties of this human existence.  No matter the difficulties that life might put in our path, we almost always have the ability to cope, to adjust, to find joy in the midst of sorrow.

As I was speaking to her, I mentioned that I felt that the uncertainty of what the future will hold has forced me to be more mindful of what's important in my life.  If cancer causes me to take more vacations, spend more time with friends and family, be a better dad to my kids, love my wife more fully, who's to say it was truly a bad thing?

The more I think about it, the more true I think that statement is.  If I was smarter, I'd like to think that it wouldn't have taken fighting cancer twice to figure that out.

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.