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. 

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

More to come…


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…


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…


Wednesday, December 14, 2016

A Cure for Clara – GM1 another terrible disease that impacts little children

12/14/16 – I typically keep my posts on this blog to my health journey but I did want to share a story of my little cousin Clara and the incredible challenge she faces with a disease called GM1. During this holiday season, it is hard to not think about my cute little cousin and the battle that her and her family is going through to get a cure for her. This is a rare progressive disease that is curable… but it is not cheap and any help you can do by sharing her story is greatly appreciated. And donating to her cause… every little bit helps. No donation is too small. 

My holiday wishes, hopes and prayers are with my cousins Jenny and Ryan (Clara’s Mom and Dad) and Melinda (Clara’s Grandmother) and most of all Clara...that they get everything they need to move forward with getting this beautiful little girl cured. 

Take a look at this video. It gives a wonderful view into this beautiful family. This YouTube Video is called “Bragg Family Video - For Clara” and here is a link to it: https://www.youtube.com/watch?v=xu9adb7E39o

Also, here is a link to a Clara’s website: http://acureforclara.com/

Behold, children are a heritage from the Lord, the fruit of the womb a reward.
Psalm 127:3

More to come…


Sunday, November 27, 2016

3 Years Since My SCT... and YES, I Would Do It Again

11/27/16 – Today marks 3 years since my stem cell transplant. Among us SCT recipients we consider this our new birthday and it is something that should be celebrated. But more important… and a question that I often get asked… Do I think my SCT was worth the time and effort… if I think it actually worked?

True, I did have a relapse afterwards. And yes, I had to have chemo in 2015 to address my relapse… But there is one thing that jumps out at me about my SCT that makes we think it was a huge success…

After my chemotherapy treatments were complete I still had signs of Mantle Cell Lymphoma. My chemo was followed up with a DLI (Donor lymphocyte infusion). The goal was to booster my immune system… to help kick it into gear where it could better fight my health woes.

With my first scan after the DLI it was found that I was in remission… this was without additional chemo… Just the work of my immune system. So, could this be because my new immune system was working? Could this be because my SCT was a success?
I am no doctor and I am by no means a medical expert but I truly believe that my current remission is due to the success of my SCT. So… YES, I do think my SCT worked and was worth the time and effort.

Recently I learned that tests show that I am still 100% of my donor. Here I am 3 years into my SCT and it is still working. Today is truly a day to celebrate for me and my family.

Today also marks the first day of Advent. This is a time that we not only prepare to celebrate the birth of Jesus Christ but it is also a time when we prepare for him to come again.

Here is a great song to help us kick off Advent. It’s called “O Come O Come Emmanuel” and it is by Matt Maher

Therefore, stay awake! For you do not know on which day your Lord will come.
Be sure of this: if the master of the house had known the hour of night when the thief was coming, he would have stayed awake and not let his house be broken into.
So too, you also must be prepared, for at an hour you do not expect, the Son of Man will come.
Matthew 24: 42-44

More to come…


Wednesday, November 23, 2016

Thank You All

11/23/16 – 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

I have been making it a practice to end my posts with a scripture verse. I decided to change things up for this post and today I am beginning with a scripture verse. This is because there is nothing I can come up with that better depicts this wonderful day of Thanksgiving. I have so much to be thankful for. God has been very good to me. I have a great family, great friends and I am feeling fantastic this year. I feel so very blessed. It was just 3 years ago, that I had my stem cell transplant on the day before Thanksgiving. So much has happened since then. I have had my ups and downs and all arounds… but all is good with me and I am very thankful for where I am. In truth, it is a shame that I do not express my thanks more often.

I would like to take this Thanksgiving season to say THANK YOU!!!

Thank you to my wife Sue for 32 wonderful years. You truly take such great care of me.
Thank you to my daughters Jill and Alli for all you love. It is a joy to be your dad.
Thank you to my family and friends for all your friendship love and support.
And thank you to all of you for following my blog. I’m just one of many who is on a journey to survive. I very much appreciate all the support you have given me over the years.

Here is a link to a song for you. It’s called “Thank You All” by Third Day

Thank You All… and a Happy, Healthy Thanksgiving to you and your families.

More to come…


Wednesday, November 2, 2016

My Happy Contradiction

11/2/16 – Throughout my adventures with MCL, my body has had times when it responds in an unexpected way… in a way that surprises my doctors. They expect me to react one way but my body takes me in a completely different direction. The nurses sometimes refer to me as a fine print patient… someone who is the exception to the rules. Sure, at times this has caused me setbacks… but sometimes things work to my advantage.

With my last update, I reported that I had another bone marrow biopsy that showed a positive result of MDS… and yesterday, I had a complete blood count (CBC) test… and the results were remarkably normal. I mean people who have never been sick a day in their lives would be thrilled with such great results.

This is extremely interesting being when you Google MDS you find that low blood cell counts are a hallmark feature of disorder and are responsible for the following symptoms that patients experience — infection, anemia, spontaneous bleeding, or easy bruising. Anemia (low red blood cell counts), neutropenia (low white blood cell counts), and thrombocytopenia (low platelet counts)… and the good news… I have none of the above.

So, what does this mean? I have no idea. It is just one of those mysterious contradictions. In my case it is a happy contradiction.

I have another follow up to check my blood counts on November 29th and then I have my next set of scans on December 19th. I’m hoping for continued good results… and maybe a continuation of my life’s contradictions.

Lord, I don’t know where all this is going, or how it all works out.
Lead me to peace that is past understanding, a peace beyond all doubt

Here is a YouTube link to a great song by the Newsboys with this same message.

Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.
Proverbs 3:5-6

More to come…