8 Years Since My SCT – Taking a Deep Dive into My Immune System

11/27/21 – I am celebrating another anniversary. It is 8 years since my Stem Cell Transplant. I find it lands at the perfect time each year. It always right around Thanksgiving and I truly have so much to be thankful for. I have two beautiful grandchildren; Millie is 2 years old and Calvin is 2 months old. I have two fantastic daughters; Jill and Alli and of course there is Sue, my wonderful wife of 37 years.

I am also very thankful to be in my longest stretch of good health since I was originally diagnosed back in 2008. I am pleased to say that it has been 5 ½ years since I have had any health issues of note.

If I was being nitpicky, I suppose I could point to me not having the best immune system. I do seem to get sick easily. There is not doubt if there is a germ in the room, it will find me… and when it does, I have a difficult time recovering. With this in mind, my friends at the John Theurer Cancer Center have referred me to a doctor who specializes in Allergies and Immunology. His name is Dr. Mohammad A Younus and I had my first appointment/consultation with him on November 1^st. After looking at my case he had me go for a comprehensive blood test. This blood test would take a deeper dive into my immune system than anyone has done before. I have a follow up appointment on November 29^th. 

Via the My Chart application I have had to chance to see some of the results from the blood test results. Some of my results of note (those that were either above or below normal values) include:

• PNEUMOCOCCAL AB (23 SEROTYPES) – all 23 were Low
• IGG – Low
• Abs CD8 Suppressor – High
• % CD4 (T Helper) – Low
• % CD8 Pos Lymph – High
• CD4/CD8 Ratio – Low
• Platelet Count – Low

The CD4 and CD8 are areas I do not believe have been tested for in the past. It will certainly be very interesting to see what Dr. Younus will have to say about them. I have heard great things about Dr. Younus. I am truly very hopeful of what he can do for me.

With all this said, even if Dr Younus can’t help me, I am just so thankful and blessed. In all honesty my health challenges are becoming a distant memory. The one thing from my adventures with mantle cell lymphoma that I will always carry with me is that everyday is a gift.

With us entering the season of Advent here is a YouTube link to my favorite version of “O Come, O Come Emmanuel”. It’s performed by Third Day. Enjoy!

 https://www.youtube.com/watch?v=x7igzA8uupU

A voice of one crying out: Prepare the way of the Lord in the wilderness; make a straight highway for our God in the desert. Every valley will be lifted up, and every mountain and hill will be leveled; the uneven ground will become smooth and the rough places, a plain. And the glory of the Lord will appear, and all humanity together will see it, for the mouth of the Lord has spoken. 

Isaiah 40:3-5

More to come…

http://mantlecell.blogspot.com

A Happy 13 Year Anniversary

 07/17/21 – It is 13 years since I was first diagnosed and all I can say is life’s been great for me.  Back in 2008 I was 47 years old, unsure of what the future held for me. This year, in 2021, I celebrated my 60^th birthday and my future is looking very bright.

At my last appointment, my favorite APN Melissa said “you could now consider your check ups as social visits”. I will happily admit that my health has been nothing but excellent. On top of this I was able to emerge from the COVID-19 pandemic unscathed.

Other than that, my family life has been fantastic. I just had the wonderful opportunity to spend a week with my family and granddaughter. To add to our blessings my daughter is expecting her second child in September.

As I say this, it makes me think about the many people who have not faired as well as I have. At times I do experience feelings of survivor’s guilt or even remorse. I just do not know why God chosen me to recover so well while other still suffer and others have not survived. It is a mystery of life I will never understand. I will always keep the people in my heart who are no longer with us. At the same time, I will never stop celebrating the wonderful gifts of life, survival and good health that God has given to me. I must always remember and be thankful for this gift and never stop trying to make a difference with the time I have been given.

 So, today is July 17^th, the 13th anniversary of the day I was first diagnosed with MCL. Me and my family choose to celebrate this day. It is a day that reminds us of how fragile we all are and that every moment we have is a gift from God.  

 

 Me and my wife enjoying the beach in Wildwood, N.J. (July 2021)

 

Here is a link to a wonderful song about celebrating life call “Rattle!” by Zach Williams

https://www.youtube.com/watch?v=GeTs6s19xX0

 Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live

John 11:25

 

More to come…

http://mantlecell.blogspot.com/

 

7 Years Since My SCT – So Many Things to Be Thankful For

 11/25/20 – On November 27^th I will be celebrating 7 years since my stem cell transplant. With 2020 being as crazy and challenging year as it has been you may wonder what is there to celebrate. COVID-19 has certainly had its effect on all of us… But as I sit here and think about my life… even with everything that is going on in the world… I truly have so much to be thankful for.

 For one thing, I am in the longest stretch of time that I have been in remission since I was first diagnosed back in 2008.

 And for some more great news… I had my scans on October 19 and I continue to be all clear. If that’s not good enough... I will not need to get scanned again for another year. This is a great relief. I am feeling like I no longer have anything to worry about. As far as I am concerned my Mantle Cell Lymphoma is very distant in my rearview mirror. Now I can simply just roll on down the highway… completely carefree... and enjoy life. This is such a fantastic time of Thanksgiving for me.

 Speaking of Thanksgiving… I will say that the anniversary of my stem cell transplant falls at a great time of year. It always falls right around Thanksgiving which gives me the wonderful opportunity to thank the people in my life who have always been there for me. This all starts with my beautiful wife, Sue. I doubt I would have gotten through everything without her love and support. There are also my daughters and their husbands who have been there to keep a huge smile on my face. And on top of them, I now have my granddaughter who is just a gigantic joy in my life.

 There is also the rest of my family and friends who have supported me and have prayed so hard for me to be well.

 Last… but not least… I am so thankful for all the doctors and nurses who treated me. I consider all of them as part of my family. They are all such special and gifted people.

 And of course, I would be completely negligent if I didn’t thank God for all the good health I have been blessed with.

 To mark both my 7^th Anniversary and the Holiday of Thanksgiving, here is a YouTube link to a wonderful song by Chris Tomlin that features Thomas Rhett & Florida Georgia Line. It is called: “Thank You Lord” Enjoy!!!

 https://www.youtube.com/watch?v=xOgAmQvOUM0

 Happy Thanksgiving to all.

Give thanks to the LORD of hosts, for the LORD is good, for his steadfast love endures forever!  Jeremiah 33:11

 More to come…

http://mantlecell.blogspot.com/

A Happy 12 Year Anniversary

07/17/20 – Today I am celebrating 12 years since I was originally diagnosed with mantle cell lymphoma. Me and my family make it a point to approach the anniversary of the day we learned of my illness with happiness and celebration in our hearts.

Now one may think that we are crazy to look at the day I was originally diagnosed with cancer as an anniversary… let alone a day to celebrate… but most we certainly have something to celebrate. We look at it is a time to celebrate the God given gift of life that we have all been given.

On top of this year’s celebration… and please know that I am not looking to jinx myself… I am currently experiencing my best and longest run of good health since My Adventures With Mantle Cell Lymphoma began. Back in June of 2016 I had clear scans and they have been so since then. This makes 4 years and 1 month of good health for me. Prior to this I went exactly 4 years (March 2009 through March 2013). So, saying this this is not only time for us to celebrate life… it is also a time for us to celebrate my good health.

There is no doubt that I truly have so much to be grateful for. I have a wonderful wife, who has been by my side throughout my journey. I have 2 beautiful daughters (and their husbands) who I love dearly. And I have an 8-month-old granddaughter who brings immense joy into my life.  

Here is a picture of me and my granddaughter Millie from a couple of weeks ago

For those who wonder why someone would put themselves through so much to battle for their lives… well you just need to look at the picture and the answer is easy. It is all about the love someone has for their family and friends. Yes, as the song goes… “LOVE ALONE IS WORTH THE FIGHT”. Here is a YouTube link to the song. Enjoy this awesome tune by Switchfoot.

https://www.youtube.com/watch?v=rk9Pj3ID0UE

Grace, mercy, and peace will be with us from God the Father and from Jesus Christ the Father’s Son in truth and love.

2 John 1:3

More to come…

http://mantlecell.blogspot.com/

A Social Visit

06/16/20 – Yesterday I had my 6 month check up with the transplant team at the John Theurer Cancer Center. I met with my AVN extraordinaire, Melissa Baker. She was happy to report that all my counts are just great. She even mentioned that it’s safe to say that when it comes to MDS we could look at it as a thing of the past.  Although we didn’t run any tests, she said she would bet that if I had a bone marrow biopsy it would come back clear.

To add to the good news, she said that I will not need another follow up visit with anyone from transplant for another year. “You are at the point where your visits here are social visits.” Of course, that was fantastic to hear.

This did led us to chat about living through this COVID19 pandemic and the importance of being careful, exercising social distancing and that I should wear a mask and those around me should wear them as well. It’s interesting how people who have gone through cancer treatment and stem cell transplants know full well the why we need to wear masks. I often kid that I have a PHD in mask wearing. Masks are not for our own protection; they are for the protection of the people around us.

I had a recent conversation with a friend who was insistent that he could go anywhere he wanted to and that he didn’t need to wear a mask. He said he wasn’t afraid of getting COVID19 and that he did not think the mask helps him in any way. I countered his comment with “you’re not wearing your mask for you, you’re wearing it for me. How bad would you feel if I caught the virus from you?” He conceded that it would make him feel terrible. So, my point… be safe, be mindful of others, social distance and wear a mask. My guess is the corona virus will be with us for a while before we have a handle on it.

As far as what’s next for me… I have my annual scans in October. I am confident that all will continue to be great for me.

I am wishing you all the best as we navigate through this pandemic. Here is a link to a fabulous new song by NEEDTOBREATHE. It’s appropriately called “Survival” Enjoy!!!

 https://www.youtube.com/watch?v=qBXNuzLHvSM

Finally, all of you be of one mind, having compassion for one another, love as brothers, be tender-hearted, be courteous.

1 Peter 3:8

More to come…

http://mantlecell.blogspot.com/

6 Years Since My SCT – A Time for Giving Thanks

11/27/19 – It is 6 years since I had my Allogeneic Stem Cell Transplant. This is a such a great thing for me as we all celebrate Thanksgiving. There is no doubt that I have so much to be thankful for. I have the very best family and friends and my health has been better than I have experienced in many years. 

On top of all this, on November 7^th I became a grandfather for the first time. My daughter Jill and her husband Marc were blessed with a beautiful baby girl named Millie. It is hard to put into words what a thrill this is for me.

When I look back to 2008, when I was originally diagnosed, I’m not sure I could have seen myself ever being called grandpa. But with great doctors and fantastic medical advancements, I have been gifted with the opportunity to see the next generation of my family. Cancer treatment sure has come so far... it truly makes you think that nothing is impossible. … and with the new treatments I am hearing about it is even more encouraging. Have you heard about the new treatment called Cart T-cell Therapy?

CAR T-cell therapy. A type of treatment in which a patient’s T cells (a type of immune cell) are changed in the laboratory so they will bind to cancer cells and kill them. Blood from a vein in the patient’s arm flows through a tube to an apheresis machine (not shown), which removes the white blood cells, including the T cells, and sends the rest of the blood back to the patient. Then, the gene for a special receptor called a chimeric antigen receptor (CAR) is inserted into the T cells in the laboratory. Millions of the CAR T cells are grown in the laboratory and then given to the patient by infusion. The CAR T cells are able to bind to an antigen on the cancer cells and kill them.

If you know of anyone dealing with a blood-based cancer it may be worth looking into this new treatment option. It sounds awesome to me.

Now, I am planning to be here to see my grandchildren grow up through all their special times… I also have great hopes to live to see my great grandchildren. Hmmm… I guess I want it all... but as I always say, keeping a positive attitude goes a long way.

Speaking of  having it all, here is a YouTube link to a wonderful new song by Matt Maher about how you can truly have it all. It’s called “Lord of My Life”. Enjoy!

https://www.youtube.com/watch?v=D7x1CXQbaWQ

Happy Thanksgiving to all.

I will praise God’s name in song and glorify him with thanksgiving.

Psalm 69:30

More to come…

http://mantlecell.blogspot.com/

All is Good with “Glitchy Richie”

10/22/19 - I had my scans recently and received the fantastic news yesterday that all my scans and blood work are great! To add to this great news, I will not need to be scanned again for another 12 months.

My wife and I met with Dr. Leslie and she was so pleased to share this great information with us. Although I haven’t dealt with Dr. Leslie much in the past, she was there in 2015 during my relapse and through a few of the big bumps in the road I ran into. At that time, she was updated on my history, how I had been a bit of a challenge with all the aliments I encountered over the years. Her words to us were… “WOW, is this Glitchy Richie? You look so great and you are doing so great. Everything looks great!!!. I am so happy for you.” This, of course was wonderful news for us… but “Glitchy Richie”???...

I wasn’t aware I was given this nickname but I certainly understand why they would call me this being all the side effects, infections, and other critical health events I went through over the years. I truly tested their medical knowledge and skills over the years. Thank God I have such great doctors. Say all this, I must say “Glitchy Richie” is a pretty cute name.

As I sit here today, I have been in remission since October of 2015. This is approaching the longest time I have been in remission since my initial diagnosis in 2008. I don’t want to jinx myself but I am feeling very confident that my days of fighting Mantle Cell Lymphoma have ended…  and let me take this a step further and go out on a limb and call myself “CURED”. Is this accurate? I'm not sure, but as far as I am concerned, I am cured. 

True, I still have that positive result of MDS looming out there, but after all the time that has passed, I have never shown any symptoms. As far as I am concerned a positive MDS test might be another one of the “Glitchy” things that seems to happen to me. Maybe I really don't have it. Based on this I have decided to treat it with the highly technical approach I call the “Ostrich Approach”. In other words, I will keep my head in the sand… and if symptoms show up some time in the future, I will deal with them…. But for now, as far as I am concerned the positive MDS result simply does not exist. I will only worry about it when I have something to worry about. In the meantime, I will focus on enjoying life and look forward to my soon to be born granddaughter who is due the first week of November…. And boy, I can’t wait to meet her.

Here is a link to a song puts perspective to where I am with my life. “Alive and Breathing” by Matt Maher: https://www.youtube.com/watch?v=gYUJjsgd96k

Enjoy!!!

Anxiety in a man’s heart weighs him down, but a good word makes him glad.

Proverbs 12:25

More to come…