Sunday, February 24, 2013

Did You Really Just Say That?

Jeff's Take

     "Oh, you have the good kind of cancer."

      Say what?  Did you really just say that?  Many of my lymphoma warrior friends and I have heard this all too often.  Let's be clear, there is no such thing as a "good kind of cancer".  Lymphoma's, Breast, Lung, Testicular, Colorectal,, Brain, Pancreatic, Prostate, Skin, Leukemia, it doesn't matter, it can and will kill you if it goes unchecked.  Even then, despite all of the medical advances, things sometimes do not work out. Please, tell me what's "good" about any of that?

     That said, it doesn't seem to satisfy some people, so here are some statistics, courtesy of the National Cancer Institute (NCI).  The statistical study covers the years 2002-2008 using the NCI 's SEER Cancer Statistics Review.  The average 5-year relative survivable rate among ALL cancers is 65.4%.  The relative 5-year survival rates of those forms I mentioned above:

1. Prostate- 99.2%
2. Testicular- 95.2%
3. Skin- 90.7%
4. Breast- 89.0%
5. Lymphomas- 70.6%
6. Colorectal- 64.3%
7. Leukemia- 55.0%
8. Brain- 33.55
9. Lung- 15.9%
10. Pancreatic- 5.8%

    As you can see Lymphomas are middle of the pack and just above the overall average.  So again, explain to me how that's the "good" kind of cancer?  This isn't an argument to say "hey, mine is worse than yours" or anything of the sort, I am just trying to clear up a common misperception.  Bottom line is that that each individual case is just that, individual.  We all react differently to treatments and placing that one case into a stereotype is a big mistake.  I told my oncologist, "Don't bother with statistics, because I am not gonna be one".  All I knew is that I was 100% sure I was gonna kick cancer's ass.

    "You don't look sick..."

     A better way to state this is, "you look well despite your battle" or something along those lines.  Telling me I don't look sick almost makes it seem dismissive.  The truth is, many cancer patients don't look sick when you see them.  I was already shaving my head prior to diagnosis, so that wouldn't have been a tell.  I didn't come into work on days after treatment when I felt like crap and looked even worse.  Many women wear wigs when going through treatments.  Thanks to some wonderful medications like Zofran that reduce nausea, steroids like Prednisone, that fill you with (too much) energy, or the development of less toxic treatments such as Rituxan, outwardly visible signs may not be as noticeable.  What is going on inside is much is much different than what the outside is showing.

   
   "You should be thankful, MY situation is ......"

   We all have difficulties in life, but recently, some comments by others on some of my friends posts have really irritated me.  When someone states they are have a difficulty with something, that is not a good time to try and "one up" them.  They need support, not a contest to see who is worse off. 
    For example, when someone states that the insurance company is giving them difficulty, telling someone that they should be thankful they even have health insurance and then stating why your situation is worse is not not only non-supportive, it's selfish and tries to make it about you.

   "Why are you so upbeat? You should be (fill in the blank)"

     Did you really just say that? I am a firm believer in a positive outlook helping me through my treatments and ultimately, my remission. The second part of that statement is what really galled me. My response on more than one occasion,  "Who the heck are you to tell me how I should be dealing with my cancer?" Up until 5 minutes ago, you didn't even know what lymphoma was, much less that it was a form of cancer. Don't get me wrong, I offer advice to others as an advocate now, but only when asked for said advice.
     You are surprised I drop an "F" bomb here or there?  Too bad, I sometimes cope that way, if you don't like it, don't read my stuff.  While you are at it, unfriend me.  Who are you to judge or reprimand me?   You don't need to see eye-to-eye with someone on everything to be their friends and support them.
     Everyone handles things differently, that's a fact. I asked questions after my diagnosis, the same questions you have all probably asked others. I asked several different people and got an array of answers. I took the ones I thought would work for me and applied them. I'd encourage anyone else to do the same. There is no "one size fits all" way of coping.
    Just don't offer advice unsolicited.

    Which leads me to the last item.  I debated even writing this, but then I would be lying to myself.  Don't judge until you read the whole statement.......

    "Have you found/ made your peace with God?"

    Whether you believe in God or not, are a Christian, Jew, Muslim, or an Atheist, this is not something to ask a cancer patient, at least not this one.  Simply asking the question implies that the person should be of like mind to yourself.  I live by one principal when it comes to matters of faith- what works for one person may not work for another, yet that doesn't make either one wrong.  I respect other people's faith's (or lack of) and I would expect them to respect my personal beliefs as well.  I shouldn't have to explain myself, nor should you to me.   I shouldn't feel pressed on the subject and neither should you.  Any relationship within a religious context is deeply personal and often contentious when individuals start discussing it.
    If someone states that they are praying for me, I thank them and leave it at that.  I am a private person in matters of faith and very few of my closest friends could tell you my beliefs much less someone who met me 5 minutes ago.  Asking me how I am dealing with my illness and matters of faith is, quite frankly, none of your business.


    There were other little things that would make me cringe when stated, but they were isolated incidents.  The things mentioned above were common repeats..  What this really comes down to is this, be open and honest with people when discussing your cancer.   Hopefully, lymphoma education can spread so all can better understand the beast.

Friday, February 15, 2013

Welcome to Your New Normal

Jeff's Take

 
I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.
Johnny Nash
 
 
    If only it were that easy Mr. Nash. 

   Don't get me wrong, like I stated in my previous blog post, I am happier than I have been in a long time.  As any survivor can attest, you are not the same person coming out of treatment as you were going in.  Physiological changes from treatment aside, mentally, emotionally, and for many spiritually, you are changed forever.  You have a new perspective on life, new fears as well.  Many call this "finding your new normal".

   In a strange way, it's more like forgetting your old normal.  I try not dwell on it because I can never have it back.  Parts? Sure.  All of it?  Not even close.  Looking back, I'm not sure I want all of it anyway.  It is very liberating to now just live life to it's fullest, every day.

   I struggled with the concept at first.  You see, I was a "What's everyone else doing?" kinda guy.  I seemingly always needed someone else to suggest an activity.  I am plenty adventurous and don't mind some thrill seeking.  Now, I take the initiative.  If something jumps up unexpectedly and changes those plans, oh well, run with it.

   So what's on the list?  For one, I have reached out to some fellow Lymphoma friends.  We are tentatively planning a celebratory trip to Las Vegas for spring of 2014.  I love Las Vegas.  Sure, the city won't be new to me, but I find new experiences there each and every time I visit.  This time- jumping off the side of the Stratosphere.  Not because I have a death wish, but because they have a free-fall jump you can do.  Let's not forget to mention the outstanding people watching we are gonna do!

   I will continue to reach out to my fellow warriors.  I cannot express the joy I get meeting these amazing people and offering support to get them to the same place I am- a survivor, check that, I'm a surthriver

   My sister, Becki and I have been attending a regular evening at a local restaurant trying to help them promote their "bar games" night.  Yes, we win prizes, but the we got the real prize the other night.  The DJ that hosts runs a charity golf outing each year so he has some tax deductions at the end of the year.  This year he wants it to benefit our walk team for our local Lymphomathon.  All I gotta do is be there and get some people to play.   Win-win.

   I am almost 11 months in remission.  Like many of you, I have that voice in the back of my head reminding me that one day my cancer may come back, but with each passing healthy day, that voice gets just a wee bit less intrusive.  And that is a new normal I can get used to, one with a bright sun-shiny day.