Saturday, March 17, 2018

Hope Is the Anthem

3/17/18 – Yeah, I know… I haven’t posted anything since Thanksgiving. The truth is that I really didn’t have much to say. Everything has been going great and I had nothing new to share. All may scans have been excellent and my blood counts have been normal… overall, I just feel so blessed on the health front.

With this post I do have something that is worth posting about. When I started this adventure with Mantle Cell Lymphoma I was 47 years old. Today I turn 57 years old. Can it really be that I am 10 years older than when we began? It’s just crazy me to think this journey has been so long. If I think back to the day I was first diagnosed… when I Googled “Mantle Cell Lymphoma” … when I read all the grim and frightening things about my prognosis…and my life expectancy. 

But that was 10 years ago… a time when Mantle Cell Lymphoma was considered a death sentence… when all you would find on the internet about Mantle Cell Lymphoma were negative survival rates and/or remembrances of those who had succumb to the disease.

But that was 10 years ago… before I met Dr. Goy… before so many wonderful medical advances occurred… before there was a realization that when it came to Mantle Cell Lymphoma there is truly HOPE for anyone who has been diagnosed with the disease.

As I think about my journey I see myself as someone who is a great example that there is HOPE… after all I been treated 3 times for MCL, I have had a Stem Cell Transplant, and yes, a few setbacks along the way… BUT the most important thing is that I’M STILL HERE.

As I said above… I am so blessed with the good health I am experiencing and now I have such high hopes for my future. I plan to make the most of every moment. And yes, my HOPE comes from God and all the great gifts He has bestowed upon me.

Speaking of making most of each moment… I recently attended a Men’s Spiritual Retreat. It challenged us to focus on things that matter most….
To be the best we can be, each day… each moment.
To pray daily, to be charitable, kind and compassionate to others
To be available to serve others… and to be that peacemaker… not an instigator
Instead of complaining, make things better
To help others be better… and never tear them down with criticism. 
…All of this being God focused at all times… being living proof of God’s love.
This was clearly very impactful

To further enhance the message of the retreat one of the men shared this, to help keep us focused on what matters.

George Carlin's wife died early in 2008 and George
followed her, dying in July 2008. It is ironic George Carlin -
comedian of the 70's and 80's - could write something so
very eloquent and so very appropriate. An observation by

George Carlin:
The paradox of our time in history is that we have taller
buildings but shorter tempers, wider Freeways, but
narrower viewpoints. We spend more, but have less, we
buy more, but enjoy less. We have bigger houses and
smaller families, more conveniences, but less time. We
have more degrees but less sense, more knowledge, but
less judgment, more experts, yet more problems, more
medicine, but less wellness.

We drink too much, smoke too much, spend too
recklessly, laugh too little, drive too fast, get too angry,
stay up too late, get up too tired, read too little, watch TV
too much, and pray too seldom.

We have multiplied our possessions, but reduced our
values. We talk too much, love too seldom, and hate too
often.

We've learned how to make a living, but not a life. We've
added years to life not life to years. We've been all the
way to the moon and back, but have trouble crossing the
street to meet a new neighbor. We conquered outer space
but not inner space. We've done larger things, but not
better things.

We've cleaned up the air, but polluted the soul. We've
conquered the atom, but not our prejudice. We write more,
but learn less. We plan more, but accomplish less. We've
learned to rush, but not to wait. We build more computers
to hold more information, to produce more copies than
ever, but we communicate less and less.

These are the times of fast foods and slow digestion, big
men and small character, steep profits and shallow
relationships. These are the days of two incomes but more
divorce, fancier houses, but broken homes. These are
days of quick trips, disposable diapers, throwaway
morality, one night stands, overweight bodies, and pills
that do everything from cheer, to quiet, to kill. It is a time
when there is much in the showroom window and nothing
in the stockroom. A time when technology can bring this
letter to you, and a time when you can choose either to
share this insight, or to just hit delete.

Remember to spend some time with your loved ones,
because they are not going to be around forever.
Remember, say a kind word to someone who looks up to
you in awe, because that little person soon will grow up
and leave your side.

Remember, to give a warm hug to the one next to you,
because that is the only treasure you can give with your
heart and it doesn't cost a cent.

Remember, to say, 'I love you' to your partner and your
loved ones, but most of all mean it. A kiss and an embrace
will mend hurt when it comes from deep inside of you.

Remember to hold hands and cherish the moment for
someday that person will not be there again.

Give time to love, give time to speak! And give time to
share the precious thoughts in your mind.

And always remember, life is not measured by the
number of breaths we take, but by those moments
that take our breath away

I always looked at George Carlin as that man who could find something funny with just about anything. I was WOWed by his serious side… his ability to put life into perspective.

So, I had a lot to say with today’s post. In short…

My health has been great
I’m 10 years older from when my adventures with MCL started
I will always be hopeful with the help of God
I want to make the very best of each moment…
Am I shooting too high to want to be as awesome as I can be each moment???
Probably but I certainly worked hard to get to where I am.
I now feel I need to make the most of it.

Here are some great songs about HOPE and LOVE that are sure to inspire you during this Lent and Easter season. Enjoy!

“Hope is The Anthem” by Switchfoot:  https://www.youtube.com/watch?v=FXIozS9B5E0

“All My Hope” by David Crowder with Tauren Wells: https://www.youtube.com/watch?v=7sxpo5Yg5fs

“The Proof Of Your Love” by For King And Country (Ft. Lauren Daigle): https://www.youtube.com/watch?v=WR3h60V2tik

Rejoice in hope, be patient in tribulation, be constant in prayer.
Romans 12:12

More to come…

http://mantlecell.blogspot.com/

Thursday, November 23, 2017

4 Years Since My SCT… Feeling So Thankful

11/23/17 – It is hard to believe that on November 27th it will be 4 years since my stem cell transplant. I was really hoping that I would have something profound to share with you… something life changing… BUT to be completely honest my life has been extremely boring… and that is AWESOME!!!!

What I can say is that I love the time of year that my SCT “Birthday” and Celebration falls. It is a time when we give thanks for all we have… and I truly have so much to be thankful for… my family, my friends and I am just so THANKFUL for the great health that I have been blessed with. I just feel fantastic, strong, and all of my ailments have disappeared.

If there is anything I would like to pass on to you is that it is good to be alive. With my 9 ½ year journey I have truly learned to not take life for granted and to make the most of each moment that God has gifted me with. Here is a link to a great song that help bring home this point. It is called “Good To Be Alive” by Jason Gray.
Enjoy!!!


Happy Thanksgiving!!!!!

My next follow up with my transplant team is November 30th and my next scans are scheduled for December 6th.

Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind, for he satisfies the thirsty and fills the hungry with good things.
Psalm 107:8-9


More to come…

http://mantlecell.blogspot.com/

Saturday, July 15, 2017

A Happy 9 Year Anniversary

7/17/17 – On July 17th 2008 I posted “On July 17th, I met with the surgeon to get the results of the mediastinoscopy. This is when I was given the news that I had Mantle Cell Lymphoma.” This led me on an internet search that returned grim and discouraging results. I am absolutely thrilled to say “Never believe what you read”. Here it is, my 9th Anniversary of being diagnosed with Mantle Cell Lymphoma and… 
I”M STILL STANDING after all this time!!!!

Even better yet, I am healthy and strong. To make things even more exciting and encouraging, I had my port removed this past Tuesday. Now how great is that???
True, my 9 years has been full of twists and turns and ups and downs but…
I”M STILL STANDING better than I ever did!!!!

My Adventures with Mantle Cell Lymphoma has been one that has truly been full of Hope, Faith and Love… and I could have never gotten to where I am without my incredible wife who has been by my side every second of my journey. I hope my journey is seen as an example of why you should never give up… and how by having faith and keeping positive will lead to good things.

As a follow up to my last post, it appears that the scan of my lungs is showing improvement. The hope is that a few IVIG treatments will clear things up. I’ll be getting additional IVIG’s every three weeks for a while. My next scans are scheduled for December and I am confident they will be just fine.

So now that I have no port… I have no disease… and all my ailments are on the mend… What will I do with myself???? I will simply Live, Love and Laugh. Most of all… I will enjoy the wonderful life that that God has gifted to me.

To mark my 9th Anniversary, here is a YouTube link for the Elton John classic “I’m Still Standing”. Enjoy!

Here is another YouTube link for a fantastic song by Peter Gabriel, it’s called “Don’t Give Up”

Cast all your anxiety on him because he cares for you.
1 Peter 5:7


Thursday, June 22, 2017

The Good, the Bad and the Ugly

6/22/17 – As I am coming up on 9 years of my Adventure it is safe to say that every cloud has a silver lining…. and yes, possibly every silver lining has a cloud. It all comes down to these character-building experiences we live through every day.

I have been dealing with a cough and shortness of breath since March. I haven’t written about it because I had thought it was my typical winter to spring cold with a topping of allergies but it just wouldn’t go away. I have been on a bunch of meds and have seen a few different specialists and have had chest x-rays, a chest CT and a CT of my sinuses that showed nothing. All I can say is that no matter what we did I had no relief. But as my world goes the day arrived that I felt better and no one can tell me why I was sick and why I feel better… it just happens.

 So why title this posting after a Clint Eastwood western? I have had a both great and confusing week. On Tuesday, June 20th I had my periodic PET scan and met with Dr. Goy for results. My results were simply great. There is no sign of MCL. That is certainly the GOOD!

BUT… as we were reviewing the PET, Dr. Goy expressed concern that there was something showing in my lung… it’s definitely not Lymphoma… but what is it? Could I have had pneumonia? Could it be that my lungs have scaring from my years of treatment? Could it be APT (Acute Pulmonary Toxicity)? Who knows! But either way this was strange to hear being I was told that my recent CT’s and X-Rays of my chest showed nothing. I am having another CT of the chest in a couple of weeks to see if anything has changed.  This is the BAD simply because I do not like foreign things showing up in my scans and my lungs.

Today, Thursday, June 22 I met with a Pulmonary doctor to check my lungs. I had a number of Pulmonary tests, which for the most part came back as normal. The one negative was that it showed I have below normal air intake. We did review the PET scan side by side with the CT from a few weeks ago and is was very clear that whatever is showing on my PET was not there a few weeks ago. This is just strange. When I was feeling very sick nothing showed in scans but when I am feeling better something is showing in the scans. This confusing deployment is what I will call the UGLY.

This all amounts to what I have been saying for a long time now… it is so important to keep positive. So many times I have dealt with challenges… and for some reason I always seem to get passed them. I am sure this will be the same.

My upcoming appointments are as follows:

July 6th – CT Scan
July 11th – Follow up with Transplant team
July 13th – Follow up with Dr. Goy
July 20th – Follow up with Pulmonary doctor

God has been very good to me. He has showered me with a great family, friends and has answered many prayers. I certainly have nothing to fear.

Here is a YouTube link to a fantastic song by Chris Tomlin called “Whom Shall I Fear (The God of Angel Armies)” that does a great job explaining how I feel. Enjoy!
https://www.youtube.com/watch?v=R0gu0nOaFsI

The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?
Psalm 27:1


More to come…

http://mantlecell.blogspot.com/

Tuesday, April 18, 2017

A Cure for the Incurable

4/18/17 – I was at the John Theurer Cancer Center at Hackensack University Medical Center today for my periodic CBC (blood test) and all my count continue to be normal. This, of course, is fantastic news. With this news, we now feel comfortable to start the process of having my port removed. Hopefully it will happen within the next month.

With this positive news, a conversation ensued with Dr. Rowley (a wonderful doctor and one heck of a nice guy) and our favorite APN, Melissa over the status of my Mantel Cell Lymphoma. We pondered… Am I in remission or could it be that I am actually considered cured?

Cured??? I had always had the understanding that MCL was incurable. How can you cure the incurable?

As it turns out MCL is probably still considered incurable when it comes to using chemotherapy to treat it… BUT with a Stem Cell Transplant, specifically an Allogeneic Stem Cell Transplant (the stem cells come from a matched related or unrelated donor) is it possible that this can result in a cure of MCL?

Let’s explore my adventure and see if there is anything that possible support this:
·       On July 29, 2015, I had my last Chemo treatment. Scans that followed showed that the four treatments of RBAC did not achieve remission.
·       On August 3, 2015, I had my first ever DLI (Donor lymphocyte infusion – a Stem Cell Transplant booster).
·       Following the DLI… On October 13, 2015, scans showed that I was in remission
·       On November 12, 2015, I had a second DLI.
·       Today, Tuesday, April 18, 2017, I continue to be in remission and MCL free.

Could it be that the Stem Cell Transplant after being boosted with DLI’s has turned my immune system into a disease fighting machine? I would love to think so.

As my good doctor, APN, my wife and I continued to chat we settled on a statement that “Mantle Cell Lymphoma is an incurable disease EXCEPT when it comes to an Allogeneic Stem Cell Transplant.” I’m not sure you will find this in any medical journals but I am personally feeling really good about it being accurate.

Saying this, MCL is certainly a very manageable disease.  As I have said many times, I plan to live to 100… with or without MCL.

As far as an update for the rest of my health, sure, I have this MDS thing looming in the background… but I have absolutely no symptoms and I spend zero time worrying about it. We will continue to monitor it with periodic CBC (blood tests).

As far as my next follow up appointments, I have my next set of scans scheduled on June 20th and a follow up review with Dr. Goy on the same day. Also, my next appointment with Dr. Rowley and the transplant team is scheduled for July 11th.

LORD my God, I called to you for help, and you healed me.
Psalm 30:2

In the Easter season is important that we remind ourselves that Jesus died to free us from sin. Here is a YouTube link to an awesome song called “Forgiven” by David Crowder. 
Enjoy!!!

He was delivered over to death for our sins and was raised to life for our justification.
Romans 4:25


More to come…

http://mantlecell.blogspot.com/

Wednesday, January 25, 2017

Counting My Blessings

1/25/17 – I had a follow up appointment yesterday... and again my counts were to near perfect. I am truly blessed that I continue to have no symptoms of MDS. I can now go 3 months before I need to get checked again. My next appointment is scheduled for April 18th.

The one thing that wasn’t great was my creatinine level. I seem to be running a little high. The blood creatinine level typically shows how well your kidneys are working. A high creatinine level may mean your kidneys are not working properly. A normal creatinine level for a healthy man is between 97 to 137 mL/min. I had a result of 158. I have had high a creatinine levels in the past and was able to get back to a normal level by drinking plenty of water. I really do not see this as a big deal. I’m sure I will be able to be back at a normal level in no time.

The bottom line is that I am feeling great and I am enjoying life. I count my blessings every day and I greet each day with rich gratitude. Thank You, Lord!!!

Here is a YouTube link to an awesome song called “Thank You, Lord” by Paul Baloche. Enjoy!!!

Oh give thanks to the Lord, for he is good; for his steadfast love endures forever!
Psalm 118:1


More to come…

http://mantlecell.blogspot.com/

Monday, December 19, 2016

An Early Christmas Present… My PET Scan is Clear

12/19/16 – What better way to kick off the Christmas season than with the news that the PET scan I had today was all clear and that my MCL is still in remission. I met with Dr. Goy today and you can truly see the joy on his face when he is giving great news like this.

Whenever I am asked what I want for Christmas my standard response is always:
Peace on Earth”. Saying this I am thrilled with this fantastic early Christmas present.

Now, I won’t lie… I absolutely love celebrating Christmas. It’s a time to be with friends and family, to spread love and cheer. It is a time for us to rediscover our inner child and a time for charity, kindness, goodness, peace, love and joy.  AND… it is a time to be Santa Claus to others… and Santa, he sure is one heck of a guy… he is really the only folk hero we have who's male, doesn’t carry a gun, and is all about peace, joy, giving, and caring for other people… BUT even Santa would tell you that Christmas is not about him. Santa brings presents to well behaved girls and boys as a reminder of the birth of Jesus Christ.  In truth… Christmas itself is really about a big present that God gave the world over 2000 years ago - Jesus!

I would like to take this opportunity to wish you and your families a Very Merry Christmas and a Happy, Healthy New Year.

As for getting back to my health update… I have my next follow up on January 24th to see where I am with MDS. I also have a follow up PET scan scheduled for June’17.

And back to Christmas cheer… one of my favorite lines from a Christmas movie is when Buddy the Elf says: “The best way to spread Christmas cheer is singing loud for all to hear.” (from the movie “Elf”). Below are YouTube links to some great renditions of Christmas songs that you are sure to Enjoy.

“Heart of Christmas” by Matthew West

“Jingle Bell Rock” by Jeremy Camp

“Noel” by Chris Tomlin featuring Lauren Daigle

“God Rest Ye Merry Gentlemen” by Mercy Me

“Joy To The World” by The David Crowder Band
  
“Angels We Have Heard On High” by Third Day

“Go Tell It On the Mountain” by Pentatonix

For today in the city of David a savior has been born for you who is Messiah and Lord.
And this will be a sign for you: you will find an infant wrapped in swaddling clothes and lying in a manger.” And suddenly there was a multitude of the heavenly host with the angel, praising God and saying: “Glory to God in the highest and on earth peace to those on whom his favor rests.
Luke 2:11-14

More to come…

http://mantlecell.blogspot.com/