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/

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…

http://mantlecell.blogspot.com/

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
Enjoy!!!

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…

http://mantlecell.blogspot.com/

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
Enjoy!

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

More to come…


http://mantlecell.blogspot.com/

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.
Enjoy!!!

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…

http://mantlecell.blogspot.com/

Thursday, October 13, 2016

Another Positive Result of MDS

10/13/16 – Let me start by saying I am so thankful for the uneventful summer I had. It was a summer full of fun with family and friends. Life is meant to be lived and I tried my best to make the most of it. Now we are in fall... my favorite time of the year... there are such beautiful colors, great weather, apple and pumpkin picking… which become apple crisp, apple pies, pumpkin bread and pumpkin pie… truly some of the greatest seasonal treats. It’s just an awesome time of the year.

Also with this fall season it was time for my periodic bone marrow biopsy to see where I stand with MDS (Myelodysplastic syndrome) which fist showed up in March and again in April.

Well once again MDS has shown as positive. It does seem with each test result the MDS impacts more cells. The good news is that my MDS condition is considered as low risk. Also my blood counts continue to be pretty good. Saying this, based on my heath history, it may be best to take an aggressive approach and treat it versus following a wait and watch approach. Treatment options being considered for me are:

1.       Having another DLI.
2.      Chemotherapy with a drug called Vidaza
3.      Continue with a wait and watch approach

As a follow up we are going to do another check of my blood counts on Tuesday, November 1st to see if there are any changes. In the meantime, my awesome transplant team will be looking into studies, literature, and speak with The John Theurer Cancer Center leukemia team to see what the best course of action is.

I have plenty of confidence and trust in the medical team… and my faith in Christ is a huge comfort… I just know I will be OK.

I just need to keep busy, keep moving and to BE POSITIVE!!!

Here is a link to a great song by tobyMAC that brings home this point. The song is called “Move (Keep Walking)”. Enjoy!!!

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4

More to come…

http://mantlecell.blogspot.com/

Sunday, August 21, 2016

A Time to Thrive - What a Difference a Year Makes

8/21/16 – I had an appointment at the cancer center this past Friday and I am thrilled to say that all my blood counts were… as crazy as it might sound…. NORMAL. Just a year ago I was being put through the mill. WOW!!! What a difference a year makes. 

If you think about it, at this point it makes very little sense to waste time thinking about the past. My focus now needs to be on the future… which is looking bright.

Here is some food for thought. Although people who had cancer and are now blessed with the gift of good health are often referred to as “survivors”, is that what we want to do… survive???
Heck No!!!!  
In my opinion God wants us to do so much more than just survive…
He wants us to THRIVE!!!!

That is what I plan to do.  

Here is a link to a great song by Casting Crowns called “Thrive” that brings home this point.

Enjoy!

My next follow up appointment is on 9/19 with Dr. Goy and on 9/28 I will have a bone marrow biopsy to revisit where I stand with MDS.

How blessed is the man who does not walk in the counsel of the wicked,
Nor stand in the path of sinners,
Nor sit in the seat of scoffers!
But his delight is in the law of the Lord,
And in His law he meditates day and night.
He will be like a tree firmly planted by streams of water,
Which yields its fruit in its season
And its leaf does not wither;
And in whatever he does, he prospers.
Psalm 1:1-3


Sunday, July 17, 2016

Celebrating the Gift of a Happy 8th Anniversary

7/17/16 – Am I crazy to want to celebrate the 8th Anniversary of the day I was diagnosed with cancer? One would think that I would want erase the memory of such an awful day from my memory. But I would tell you this is absolutely a day to celebrate. I feel the need to celebrate the battle, celebrate that fight, celebrate that I have endured, celebrate that I survived, and most of all celebrate that I am still here.

If my Adventures with mantle cell lymphoma have taught me anything it is that every day is a gift. A gift that we should never take for granted. With each day I truly feel that we need to make the most of it, focus our time on what matters and never sweat the small stuff… and we should never carry grudges… we should always have forgiveness in our hearts… Life is too short... Relationships with our loves ones, family and friend are just so valuable. We should always show our love and appreciation for them and never let small differences bring harm to our relationships.
We hear that we need to work hard to achieve the American dream. I would argue that what we really need to do is to LOVE HARD… and keep peace, love and happiness in our lives.  

On Saturday, July 16th my beautiful bride of 31 years and myself went into to New York City for lunch at Carmines and to see a Broadway play in celebration of my 8th Anniversary. We had an awesome day. We saw “The School of Rock”…. What an entertaining and enjoyable play. This was especially a happy celebration being the past year was a pretty tough one with chemo, unplanned hospital visits, issues with blood counts, ITP, and more… If you think about it was less than a year ago that my heart stopped, I was a code blue, I was knocking on heaven’s door… BUT I am here now… feeling great, feeling the best I have in a while… I am alive and well… so you bet I am going to celebrate.

If you are reading this blog as someone who is a fight with cancer (or knows someone in a fight), please know that in the past 8 years I have had many days where I have felt fantastic… and I certainly plan to have many, many more. This is a fight that is well worth it and although there may be times when it is hard… this does pass and there will be great times ahead. Keep the faith, keep the hope and BE POSITIVE.

Here are YouTube links to a couple of great songs of encouragement and inspiration by Switchfoot.

“Dark Horses” – a song about never giving up

“Live It Well” – a song about focusing on what matter in life

This is the day that the LORD has made; let us rejoice and be glad in it.
Psalm 118:24,

Wednesday, June 22, 2016

School's Out

6/22/16 – WOW… it’s like I am a school kid starting summer break. I met with Dr. Goy today with the expectation that I would be starting PD-1 (Opdivo) today. We started with reviewing the results of my PET scan (yes, I had a PET on 6/20 in preparation for beginning PD-1). Dr. Goy happily reported that all was clear. He then said “you have been through a lot and now you are doing so well. I think you deserve a break.” He then proceeded to tell me that he wasn’t going to start me on PD-1 today. He wrote a script for another PET scan in 6 months… at that point we will see how I am doing.

In truth,  I am a little relieved. If my scans are clear and I am doing well, why introduce a new drug when we are unsure on how I would respond to it. I would rather take a break and enjoy my good health. So, I am really happy with this decision.

My next PET scan is scheduled for December 19th. I also have a bone marrow biopsy schedule for September. This is to follow up on the MDS… but I am not even thinking about that at this point. I have an entire summer in front of me to enjoy.

In celebration of my good news and time off, here is a link to the Rock N Roll classic “School's Out” by Alice Cooper. Enjoy!!!

Return to your rest, my soul, for the Lord has been good to you.
Psalm 116:7

More to come…

http://mantlecell.blogspot.com/

Tuesday, May 31, 2016

All Quiet on the Health Front

5/31/16 – It’s been about a month since my last post and not much has changed for me. My blood counts continue to be great… one may even say that they are normal. As far as it goes with my most recent challenges, we will revisit my MDS in September when I will have another bone marrow biopsy. Also, I will be scanned in August to hopefully see that I am still in remission with MCL.

In the spirit of “life goes on”… today I received a number of vaccinations - Diphtheria, Tetanus, and Pertussis as part of the DTap vaccine. In addition I received Hib (Haemophilus influenza type b) Hepatitis B, Polio, and Pneumococcal Disease. Vaccination wise I am now on par with a 1 ½ year old.

On the exciting side of things, I have an appointment with Dr. Goy on June 9th to discuss starting my PD-1 (Opdivo) treatments. For someone with lymphoma this is really pretty cutting edge stuff. The hope that comes with this is longevity… and I am all for it.

Other than that all has been quiet on the health front… and I must confess that living a quiet, boring, normal life is a very good thing.  

And we know that for those who love God all things work together for good, for those who are called according to his purpose.
Romans 8:28

More to come…

http://mantlecell.blogspot.com/

Thursday, April 28, 2016

Crazy Times

4/28/16 – I met with Dr. Rowley today and learned a lot more about my situation with MDS. It all points to chromosome 20. Basically the bone marrow biopsies are showing a 20q abnormality. The crazy thing is that I am feeling better than I have in a very long time.

With that said, as long as my counts stay good we will take a wait and see approach and hold off doing anything for about 6 months. At that point I will have another bone marrow biopsy. Of course if my counts drop before then (which can be a sign that the MDS is progressing) I will have a bone marrow biopsy sooner. If this does progress it seems that the best treatment would be for me to have another stem cell transplant… but let’s not get too far ahead of ourselves. For all I know I could have a clean bone marrow biopsy in 6 months.

In discussing why this 20q abnormality is happening to me one thing that has been speculated is that it could be donor derived. This doesn’t mean my donor had MDS. It means that if my donor had chemo therapy that there would be a good possibility that he would have developed MDS afterwards. How crazy is that???

Another thing that has come up over the last two weeks is that I have an itchy rash on my neck, arms, chest and back. It is not a bad enough to be considered GVHD but it is bad enough to be a reason to delay treating me with PD-1 (Opdivo). Apparently PD-1 and GVHD do not play nice together. If there is the slightest chance that my rash is GVHD then it is better to play it safe than sorry.

So… I think my word of the day is “Crazy”. I guess it’s fair to say that things are never boring with me.

I have a follow up with Dr. Rowley in two weeks on Friday, May 13th. Friday the 13th??? 
I’m sure nothing crazy could happen…. Right?

Check out this song by Jars of Clay called “Crazy Times”

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:7


More to come…

http://mantlecell.blogspot.com/

Wednesday, April 20, 2016

Bone Marrow Biopsy Results Are In

4/20/16 – Over that last few weeks my counts have been awesome. My platelets have gone from 97 to 123 to 126 to 137. I couldn’t have asked for more. With everything trending towards good news the thinking of those a heck of a lot smarter than me was that I should have nothing to worry about with my latest bone marrow biopsy (taken on April 8th). 

Well the one wild card is that this is me and when have I ever followed what was supposed to happen?

I heard from Dr. Rowley today via a phone call and I was told that the test results again showed positive for MDS (Myelodysplastic syndrome). This certainly was not the news I wanted to hear. I did not get many details. I’m sure we will get into this when we meet face to face at my next check up on Thursday, April 28th. Dr. Rowley did say that with my counts being so good that there was no reason to rush into anything and if my counts stayed good we could hold off doing anything for about 3 to 6 months… and at that time I will have another bone marrow biopsy to see where things stand.

So now I just need to keep positive, have faith and keep the hope.

Here is a YouTube link to a great song by Rend Collective called “Joy of the Lord”. It is a wonderful song for keeping my focus on what matters.
Enjoy!!!

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.
1 Thessalonians 5:16-18

More to come…

http://mantlecell.blogspot.com/

Saturday, March 26, 2016

A Very Good Friday

3/26/16 – Yesterday was one of the holiest days of the year. Good Friday is a day commemorating the crucifixion of Jesus Christ and his death at Calvary. As Christians we know that Jesus’ death is not an end… but a beginning. Good Friday is followed by Christ’s resurrection and us being delivered from sin.

It is very interesting to me that on this day by counts decided to take a turn for the “Good”. My platelets leaped to 91, my white blood cell returned to normal and my red blood cell and hemoglobin are on the rise. All of this with no treatments. Certainly a Very Good Friday for me.

I will have a follow up count check next Friday on April 1st.

I would like to take this posting as an opportunity to wish everyone a Happy and Healthy Easter.

Here is a YouTube link to a wonderful song called “Jesus Messiah” by Chris Tomlin that is truly in the Easter spirit. Enjoy!
https://www.youtube.com/watch?v=FwJzTV1uurU

He is not here; he has risen! Remember how he told you, while he was still with you in Galilee: “The Son of Man must be delivered over to the hands of sinners, be crucified and on the third day be raised again.”
Luke 24:6-7


More to come…

http://mantlecell.blogspot.com/

Monday, March 21, 2016

Each day seems to bring something new

3/21/16 – The last few updates to my blog have been difficult because it seems each day brings something new and it is hard to carry one topic into another. My blood counts have taken a new direction of late. My platelets are actually gradually increasing. I was at 67 today. The issue is my white blood cell, red blood cell and hemoglobin have been dropping. This is causing me to be weak and tired most of the time. I am able to keep myself productive… as long as I keep moving. The problem is when I am not active the tiredness takes over and I have to fight myself from falling asleep. This also causes my legs to be very weak.

We have decided to not take any action at this point and simply allow this to fester to see what happens over the next few weeks.

We are planning to have another bone marrow biopsy the first week of April to see if the MDS from the last test is something to be concerned with… or not.

With today’s update along with PD-1, ITP and anything else I may have left out… I have many balls in the air. I just need to keep hopeful, faithful and positive.

the LORD delights in those who fear him, who put their hope in his unfailing love.
Psalm 147:11

More to come…

http://mantlecell.blogspot.com/