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/