Remission - What does that mean exactly?

My daughter, Lauren, was with me when I was given the results from my last CT scans.  As I have told you before, it is difficult not to dwell on the "what ifs" as you wait for results that may abruptly alter your life even more than it already has been.  But, when Dr. White came in smiling, we knew it must be good.  "There's no new growth, everything is the same," she said.

With that, I exhaled.  She went on about my blood numbers, what we needed to do next and then in one of her statements mentioned, remission.  We talked about other options.  Lauren questioned her about the possible damage from the leaking port that had been removed in April.  "Obviously, not a good thing to happen," she said, "but, the treatment you are on can be absorbed by the tissue without major damage."  Somehow, that was not as comforting as I would have liked.

But on to other concerns. She said, "Remission!"  Remission is a term that doctors frequently use and it refers to the response of the cancer to the therapy. A complete remission means that the cancer has completely disappeared with the treatment.  I do not have complete remission and remission does not mean a patient is cured.  So...I am hesitant to even say that word cause I am still having chemo, and enduring all the side effects that come along with it.   Just means the cancer hasn't changed in the past few months and that is a very good thing.  Last year this time, the treatments were not working and I didn't know if I would see the beach this summer.  But I am still here!

Anyway, I am having a PET scan this week at the PCMH.  Not sure what day yet, seems it takes a while to get it cleared with insurance.  This test will tell us how much of my tumor is scar tissue and how much is "active".  I may be a candidate for a procedure at the Mayo Clinic in Florida, but we have a few tests we must do first.  I'll keep you posted.

But most important, it's summer.  Please enjoy every minute if only for ME!  When you look out your back door, really look at the birds, the lightning bugs, the sky, the leaves on the trees.  Don't sleep walk through life cause take it from me.....it's not the destination it is the journey.

PCQ

2011 Big Rock Tournament

Dance like no one is watching.  And if you can't dance, do something to push yourself to live everyday and have fun.  Go fishing...or if you can't fish, cut bait.  And if you can't fish or cut bait, watch other people do it.

Been trying to do that.  My friend, Joanie, called me last week and said, "Come down to the beach and stay with me for the Big Rock Tournament".  She didn't have to ask twice.  She was staying in a great cottage just off the beach.  Just so happens that it is owned by one of John's business friends.  They don't rent it out much, but knew John's friends would be good folks to have.  And we sure tried to be.

But back to the tournament, it was fun.  Three marlin were brought in Monday, the first fishing day, and Joan was there for them all.  Loved seeing the excitement in her eyes!

John and I usually try to get down to the tournament every year.  He has actually fished in the tournament in the past. Last year, we took the RV to spend the night. But this year wasn't easy.  Every place John and I stood last year, everything we did, was in my mind as Joan and I walked about.  They are good memories though. We got to see a few of the big ones brought in, but we weren't there for the biggest controversy probably to ever hit the tournament.  The biggest fish caught last year was eventually DQ!

The controversy surrounding the 2010 Big Rock Blue Marlin Tournament’s top prize really got everyone stirred up and the media coverage went crazy. Tournament officials stopped the awards presentation due to a rules violation by the Boat “Citation”. That crew actually caught a record-breaking 883-pound Blue Marlin and was set to receive the top prize of more than $900 K.  Enough money to get your attention.  But due to a rules violation, one of the crew didn't have his fishing license...they never got the check.  Rules are rules, and if you're not going to follow them, then you are subject to the penalty....but $900K...man that is a bite!   Bet that captain never makes that mistake again.

The unlicensed young man who was part of the Citation crew was from Virginia.  My daughter, Meredith, had actually gone fishing the week before with friends on a boat out of Hatteras and he was part of that boat's crew, so she knew him.  As it turns out, it is my understanding that you don't have to have a personal license in Virginia, the boat has to be licensed, but the rules are different in North Carolina.  First thing you must do is follow the rules!

Back to this year's tourney, we got to see them bring in the winning fish.  Of course, we didn't know that then...there was still a week of fishing left.  And Joan realized there really is a "big rock" out in the ocean where everyone goes to fish for the big ones, hence the name for the tournament.

So, again this year I got the flavor of the Big Rock.  Saw a huge yacht come in to dock at Morehead City, too.  Fourth largest privately owned yacht in the world.  At least that's what it said when I googled the name, SeaFair, that was on the side. 200+ feet long, $40M+, nice to see how the rich folks live.  Boat was on its way to Rhode Island, apparently, it was for floating art and jewelry shows and had a champagne and caviar bar.  Well, well, Morehead City was certainly in good company with that fine boat.

Joan and I had a great time together talking, rummaging through second hand stores, and just enjoying the smell of seafood and the beach.

Thanks Joanie....pulling my wagon to the beach was a load of fun.

PCQ

Happy Father's Day

It's Father's Day, our first without John.  I didn't think it would be so hard.

When I awoke this morning, I was blessed to be with dear friends and.... to be able to look out my bedroom window and see the sun coming up on the Pamlico River.  The river has given me and my family many, wonderful and warm memories.

So I guess it was fitting that I was there on the first Father's Day without John.  As I looked at the river, it reminded me of all the fun things John did for us and my daddy.  Hours and hours of driving the boat, pulling us from one end of the river to the other on all the water toys, sailing, checking nets and crab pots, you name it, John would make it happen.

Our simple place on the river was a refuge for family and friends, providing a backdrop for precious time with my dad, (he loved to set fish nets), our girls with their "Papa Lee", and so much learning for us all.  Our girls learned how to ski there, how to tell the difference between a she crab and a male....and whether it had eggs, or was ready to shed and become a summer delicacy as a soft shell crab.  We went on shark teeth and lightning bug hunts, could identify the fish we caught, knew where all the osprey nests were and learned the rules of the river.

But as I lay there looking out across the water, my thoughts returned to last year.  Meredith came home for Father's Day, to spend time with her daddy and to cook a wonderful dinner for him.  And what a grand meal it was.

John's lymph node on his neck was swollen and Dr. Barrow had put him on antibiotics.  I remember so well him telling Meredith about it that day. Didn't seem like a big deal at the time.  Little did we know what was to come.  His lymph node swelled the week after we found out the tests and scans showed my tumor was growing... my chemo treatments were not working.  

Coincidence?  

PCQ

Paying Forward

• • This is a sweet email I received from one of John's on line "girlfriends".  She gave me permission to use it on my blog.  
    Pat,
    I read your post on FB where you mentioned NO REGROWTH...sooo happy and relieved for you. I understand the wait involved with these tests. One time my daughter and I decided we just couldn't wait on her dr to call us with her MRI results, so we drove down to the the radiation department in the hospital, picked up a copy of the films AND the radiology report, proceeded to a room that said 'staff only' posted the films (before cd's) on the board with the light and were certain that WE would be able to determine the results. LOL! The wait was just that hard for us. Of course, we couldn't determine a thing and what we DID read from the report scared the bejeezus out of us. Lesson learned.
    
    Like you, my daughter's remaining cancer is in an area that cannot be operated on. They DID operate in the past and removed as much tumor as possible, actually removed her mouth, cheekbones and went straight back to remove as much tumor as possible. 14 hour surgery in NY. Put her back together, but with a lot of neck bone removed and rods put in place. Total of 11 surgeries. Her remaining tumor is near the brain stem. She was given 3-5 years to live, and it has now been NINE years. She has NO clue she was given 3-5 years, she stood up when the doctor talked statistics and said "I am NOT a statistic." When she went for her radiation (specialized radiation called proton beam) at Mass General in Boston, she was lined up with a support group. She said "I'm sorry, I am too busy living my life rather than dwell on my illness." So I did what any good Mom would do, I got her a fake ID, we went out and drank beer and explored Boston. BTW, I met a total stranger on one of those nights out, I was feeling really down and I talked that poor guys ear off. We've been married 5 years now 
    
    There have been complications over the last few years. She was in a long term relationship, ended up pregnant, she gave birth, they split up and she and sweet Isabella moved on with their lives....until complications set in. She developed a serious spinal fluid leak at her brain stem (from previous surgeries) and had a 12 hour ride to NY, to her original surgeons. Nothing Duke or TN could do for her. The NY docs saved her life AGAIN and her recovery has been a long road. She has limitations now, cannot ever bend past her heart, I could go on and on...but she is a WONDERFUL Mother and I am so proud of her. She keeps positive, always has a beautiful smile and when she walks in a room, the sun comes up. She and Isabella live with us and I wouldn't have it any other way.
    
    I have not done so well. Long story, but for 3 months last year we didn't know if she would make it, and it took it's toll on me. I reached a point where I felt I would never take my own life, but somebody please do it for me. The emotional pain was just so deep. The reason I am telling you this, is that YOU helped get me through this. YOU have no idea of how much you have affected my life, and in such a posiitive way. (I'm crying now) The strength, the dignity, the courage, the grace you have shown through the hell you and John went through and that you are still going through have kept ME going. When I couldn't get out of bed, I thought "what would Pat do?" So I got my ass up and I put one foot in front of another. I'm not saying it's been a piece of cake for you, I KNOW you have been through hell, I read between the lines and know the pain, but you keep on keepin on. I figure with everything you have been through, are going through, I have no right to give up. Damn you...lol.
    
    I wish I could better express how much you and your blog has meant to me. Thank you so much Pat, for being such an inspiration, for making such a difference in my life and for being YOU.
    Big Hugs
• 
  

  May 31

  Patricia Lee Adams

  • Oh Sweetie, your missive breaks my heart. But....I am so happy to know you have gained strength from me. Isn't that what God's love does? We are the hands and feet of God.
    
    I too have looked at others and said, "if they can do it, I can too!" And sometimes, I do it because John would be disappointed in me if I gave up!!! He NEVER complained, and I find it so easy sometimes to let it spill out as you said, but try to hold back cause we all have a "wagon" to pull.
    
    So thankful that your daughter has you (you are God's hands) to protect and love her and her precious child. I remember reading your plight some years ago. John certainly cherished your on line friendship and was amazed by the resilience of you both. I know that was unbearable, but she has made life continue. She is remarkable. And Lord knows it is not easy when everyone says the sky is falling! Yes, my scans show no growth, but that in a way is misleading. The tumor will grow at some point. Typically, this type of cancer is slow growing and will out wit the meds. We will then go to the next plan and hope it works. You know how all this works. We just hope our bodies will be able to tolerate the events. '
    
    In my heart, I feel John was devastated by my illness. He loved me so and I will NEVER believe that this 'just happened" at this time. I will always believe the hurt in his heart for me caused his illness or at least pushed it along. I know it is probably crazy, but I was with him, I know what he went through and when the doc told us how long he had this growth, it started at exactly the same time I was getting really bad news. Everyone tells me it couldn't be, but I will always say it did.
    
    Please continue to surround yourself with good friends and love and make sure she does that too. I know your love has certainly kept her going too.
    
    I would like to ask a favor? Can I use your note in my blog? I will erase any names so no one will know who you are...unless they know you already and can put the pieces of the puzzle together. I think your message will give strength to others. OK? Let me know.
    
    My love to you and your family.
    Pat
• 
  

  May 31

  • This is her response to my email:
    
    Pat,
    I have someone else in my life who is going through a very hard time, she says I inspire her to keep going, so I guess we are all 'paying it forward.' Amazing how that works.
    
    I can certainly understand your thinking about John's illness. Of course, tobacco was involved but maybe sometimes cancer/illness can be the 'perfect storm' within our bodies. I just hope that you are not beating yourself up as it's not your fault. My Mother had mini strokes shortly after my daughter was diagnosed with cancer and mother passed away in 2009 from a major stroke. Neither you nor I can control these things. I was so run down from this past year and just got over double pnuemonia. I have set new goals with my health, positive goals 
    
    Of course you may use whatever you like for your blog. Thank you so much for your email Pat, means a lot.
    Take care!
    
    
    It is amazing the strength we gain from one another.  Sort of like wearing life's water wings!
    PCQ
• 
  

  4 hours ago