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.

Monday, January 21, 2013


I Have Lymphoma, and I’m Happy

Jeff's Take

  
     Before you decide that I am crazy, hear me out.

     I am in remission, so I do have that caveat in my favor, but let me backtrack about 16 months to give some context.
     It was just after Labor Day in 2011, September 9th to be exact.  I had been divorced for about 2 ½ years at that point and just starting to get out of my funk and get back to living life.  I hadn’t realized how co-dependant I had become and was pretty unhappy with life.  Then the moment that would change my life forever happened.
      Long story short, I had developed a blood clot in my lung, the CT scan also showed an enlarged spleen and enlarged lymph nodes.   The doctors  ordered a biopsy and then the cancer bomb hit. The doctor performing the CVIR biopsy said, “Usually when I go in to get this, it’s a form of lymphoma”.  Like many others, unless you have had it or know someone with it, you probably didn’t know what that is or that it’s even a form of cancer.  So of course I drove myself crazy once I got back to my room looking up everything I could find.
     When the oncologist sat me down to tell me the type, treatment options, statistics, all of it, I took it all in like sponge.
      I remember this moment, the day my attitude on life change for good, as if it was yesterday.  He asked, “Are you okay?  It’s a lot of stuff I just threw at you, I know it seems overwhelming, but….”.
     I stopped him in his tracks and replied, “I’m great, forget how we got here, what are we gonna do to kick it’s ass in time for golf season?”.    He chuckled, shook his head and away we went.  I won’t bore you with the details of treatment, that’s well documented by many who have had the same, but I never had that“woe is me” moment and reflecting back, that was soooooo not the old me.
 
     It was in November of 2011, I connected with another remarkable lymphoma warrior many of you may be familiar with already, Megan K.  We "met" on our lymphoma support board on Facebook.   We only live 30 minutes from each other and despite having different forms and being separated by 20 years of age, we became quick friends.   We discussed everything regarding our treatments, the gross details we all want to discuss with someone, but may not have that person around to understand what we are going through.  This was the beginning of me networking with other lymphoma warriors. They became my new family.  I came to know many of them better than some of my closest friends despite never meeting them in person.
     I realized that for the first time in many, many years, despite battling lymphoma, I was happy.  I had a whole new group of friends, ones who didn’t care what you looked like, what you could do for them, what your job was, any of the usual drama.  All we cared about was trying to help each other cope, lend support, and get each other back to being healthy again.
     The support I try to give on a daily basis is fulfilling beyond reason. Then there are some big moments that I receive far more than I give, although my counterparts may argue the same in their favor.
     On July 1st, 2012, Megan and I finally met in person at our Lymphomathon team fund raiser. All big hugs, smiles, and fun.  The next day Megan found out she had refractory Hodgkin’s and not classic nodular sclerosing.  She still had a long battle still ahead, yet by the end of the day we had filmed a spot for her now famous video and went to dinner. Despite the news earlier in the day, at that moment in time, we were happy. In September we walked together at Lymphomathon, in lock step with other warriors, several of whom recognized Megan from the video. And I was happy.
     In December of 2012 another fellow warrior from the lymphoma board, Tina, travelled down from New Brunswick, Canada. I flew into Providence to meet her and together we were off to surprise another warrior living in the Boston area, Erica,  to lend support as she was heading towards her stem cell transplant.  None of us had ever met, but you would have never know it if you saw us together.   And we were happy.

     Here we are, it’s January of 2013, and I have an awesome set of lymphoma buddies, some still battling as I type this and the group grows all the time.  I am only 9 months in remission with the specter of a possible recurrence one day still fresh in my head.  I am still paying off medical bills on a payment plan, my meager life savings spent on treatments.  And I am happy.
     I recently attended a meet and greet for the Lymphoma Research Foundation and finally met a long time online buddy, Angela in person and met other warriors.  I‘ve been asked to be on this years walk committee and to become more involved in other ways and you bet I will! I am happy to give back.
     The support bracelets I bought right after diagnosis are inscribed with “No One Fights Alone”.  To me, it’s not just a saying, it’s a way of life.  I feel it’s whom I was meant to be and what I was meant to do.
     I have taken far more from lymphoma than lymphoma has ever taken from me. I don't sweat the little things anymore.  I stop to smell the flowers, admire the sunsets, and I stop to feel the rain pound on my face.  I still have a dislike for shoveling snow, but hey, that falls under the "little things" category.

     One day, a cure will be found for lymphoma, but until that time, I have lymphoma, and I’m happy.

Tuesday, January 15, 2013

What is Lymphoma Lyphe?
 
 
   Lymphoma Lyphe is the brainchild of myself, Jeff and my friend, Megan.  We received so much support with our battles with this horrible disease, that we have decided to pay it forward.  Not so much with facts and statistics, but relating our stories and experiences in the hope that it helps others cope as they begin or struggle with their journey.
 
   A little bit about us.  I am in my mid-40's and now just over nine months in remission from Diffuse Large-B-cell Non-Hodgkin Lymphoma.  Megan is in her mid-20's and has just completed a stem cell transplant for Refractory Hodgkin Lymphoma.  Some of you may know her from a video she posted to the song "Stronger" by Kelly Clarkson.  I am one of the bald guys trying to keep pace with her dancing while holding the "survivor" sign.  http://www.youtube.com/watch?v=BaQdwTsVtCY
 
   We "met" on an online support board, noticed we live 30 minutes apart and became quick and great friends.  We have started our own Facebook page by the same name, "Lymphoma Lyphe" where we video blog.  https://www.facebook.com/LymphomaLyphe#!/LymphomaLyphe
 
   We truly love giving back, participating in our local walk and in my case, having travelled to meet some other warriors.  We hope you find support and useful information as we update along the way.  We can't give medical advice, but perhaps can direct you to the right information.