5 Years Since My SCT… New Beginnings

11/27/18 – Today I celebrate my 5^th “birthday” … or should I say 5 years since I had my stem cell Trans plant. With this being a time of year when we focus on what we are thankful for, there is so much for me to be thankful for. My health has been great, my friends and family continue to be such blessings in my life, and at this 5-year mark I also have the opportunity to celebrate new beginnings.

One change in my life is that recently I have been laid off from my job. I had been with this company for 32 and ½ years. I will always be thankful for the support the company gave me throughout my adventure with Mantle Cell Lymphoma. Also, I leave this company with some great parting gifts like an early retirement package.  One may look at being let go from your job as a bad thing… but I see it as an opportunity to pursue my interests. At this point I am unsure what I will do but I am only 57 years old and thanks to my doctors I have plenty of runway left in my work life. Will I start a new career? Will I start a new business? Will I simplify my life and retire? I have time to work this all out… but no matter what I do I am excited for this opportunity of a for this new beginning.

Another thing that a new beginning and cause to celebrate is that my daughter Alli got married to her fiancé Dustin on October 19^th. It was so great to be a part of this as a healthy and energetic father of the bride. During this blessed day I had the honor of being asked to play song during the marriage ceremony, the thrill dancing in the father/daughter dance and joy of having a blast at their wedding. I again thank my oncology and transplant doctors and staff for the opportunity to celebrate such a wonderful event. 

Here is YouTube link of me playing a song at my daughter’s wedding: https://www.youtube.com/watch?v=McV0yOG1AEc

Here are some pictures from the wedding:

  

Another thing I am thankful for is the wonderful Thanksgiving I had with my family. My daughter Jill and her husband Marc hosted me, my wife and Alli and Dustin at their home in Atlanta. Everything was just amazing. It was just so special to spend time with the people who are most important to me. With me 5 years into my SCT and over 10 years since my MCL diagnosis, I never want to miss an opportunity to celebrate life and love. 

If there is one thing that remains a challenge for me on the health front is that sometimes my immune system is a little weak and I get sick with colds, sinus and upper respiratory infections. It seems every year I get sick during the fall season and it takes a number of courses of antibiotics and steroids time to get over it. This year my fantastic doctors and APN’s have been on top of this and have been providing me with proactive IVIG’s to boost my immune system. I don’t want to jinx myself but if sure seems like this has worked. In addition, I have taken other precautions to ensure I stay on my feet. I made sure I have gotten my flu and shingles shots. I recently had a pretty bad case of shingles… trust me, if you are eligible to get the shot, go get it. I guess the bottom line with this is that some of this falls on me. I need to be diligent to make sure I do everything possible to ensure I stay in good health. I do have my periodic scans tomorrow. I have total confidence that all will be fine.

Again, I cannot say it enough just how thankful and blessed I feel.

Here is a YouTube like a great song by NEEDTOBREATHE called “Oohs and Ahhs”, The main refrain states:  

We got oohs, we got ahhs

We got everything a man could need

We got oohs, we got ahhs

Still got a mountain full of mouths to feed

Link: https://www.youtube.com/watch?v=IeunxO2Qzaw

See, I will create new heavens and a new earth. The former things will not be remembered, nor will they come to mind.

Isaiah 65:17

More to come…

http://mantlecell.blogspot.com/

A Happy 10 Year Anniversary

7/17/18 – What can I say??? My blog “My Adventures with Mantle Cell Lymphoma” has become a vehicle for me to report my happy milestones…. and with this post I am more than thrilled to report that on July 17, 2018, I celebrate 10 years since I have been diagnosed with MCL... my health is looking great and even better… I feel great.

Trust me… I make it a point the thank God for every new day I get to spend with my loved ones. I am truly blessed.

Thinking about how far I have come… out of curiosity I decided to search google on “survival rates for Mantle Cell Lymphoma” … I will say that I was a bit shocked at what was returned. It said…

What is the prognosis of mantle cell lymphoma? MCL has a poor prognosis, even with appropriate therapy. Treatment failures usually are noted in less than 18 months, and the median survival time of individuals with MCL is about two to five years. The 10-year survival rate is only about 5%-10%.

… A 10 year survival rate of 5 to 10%??? YIKES!!!!!

Looking further I found that the odds are even worse for people who have relapsed more than once…. and as a reminder of my journey... I have relapsed twice (2013 and 2015) plus I also had a stem cell transplant in 2013.

As I ponder on what the google search returned I concluded that this is one of two things… either I am more blessed and lucky than I had ever thought… or that what we get back from google searches is way out of date. My guess is that it is both. I am no expert but I have to believe that a prognosis for MCL is significantly better that what I found in google. 

Know that I am not the type of person that obsesses over these types of statistics… I am not a worrier…. I just cannot think about what may happen in the future… I take each day as it is gifted to me and strive to make the most of it. It is truly with my faith that I believe God delivered me and my family from pain and suffering…and I find it a necessity that we celebrate how good God has been to us.  

As a way to celebrate this happy milestone… my wife and my daughters will be going into New York City to have a nice lunch at the world famous “Carmines” and then go to a matinee of a Broadway play/musical. There is nothing I would rather do than to celebrate with my family.

God is Good, God is Great!!!!

Here is a YouTube link for a song called “Our Deliverer” by one of my favorite bands, Third Day: https://www.youtube.com/watch?v=QhqZxZTY5js

I sought the LORD, and he answered me; he delivered me from all my fears.

Psalm 34:4

More to come…

http://mantlecell.blogspot.com/

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/