A Happy 16 Year Anniversary

07/17/24 – As the years go by, it is difficult for me to express how blessed my life has been. I now have 3 grandchildren… with another on the way. I find my health improving and myself feeling stronger. It has been 16 years since I was first diagnosed, and at 63 years of age, I still work full time… plus about a year ago I started to play music as a solo performer at local bars, breweries, restaurants, etc… Although I only perform 2 to 3 times a month… when I have a gig, I play for 3 hours. This certainly takes a lot of energy… energy I didn’t have just a few short years ago.

I won’t lie, I have had a few health issues. I had mentioned on a prior post that a weakness was found in my heart, which is caused by all the chemo I have had over the years. After treating this issue with medication, tests now show that my heart is back to normal. God is Good!

I also had an incident a couple of months ago where I was experiencing chest pain and I ended up in the ER. After an array of tests, it was found my heart and lungs were fine. In addition, the tests showed that I had no tumors. So, as crazy as it may sound, my trip to the ER resulted in good news. God is Good!

The one incidental finding from my visit to the ER was my gallbladder was pretty full of gallstones. It’s nothing that needs to be addressed urgently, but me and my gallbladder may be headed for a permanent separation.  

The one thing that remains a bit of a challenge for me is my immune system. Anytime I stop my IVIG’s for a while, I start getting upper respiratory infections. Another challenge has been that my veins are getting harder and harder to find. I have become an IV nurse’s nightmare. On the day of my IVIG infusion, the nurse would take as long as an hour to find a good vein. When the infusion finally started, in a short time my arm would begin to swell. This was caused by the needle in my arm slipping and the IVIG medication would start to accumulate under my skin. Of course, we would need to stop the infusion and start the process of finding another vein. I decided to speak to my doctor about stopping the IVIG’s. Instead of stopping… he suggested we try something new. With this new procedure I would receive the immune boosting drug via a subcutaneous injection. I decided to give this a try. The new drug is: Xembify – Immune Globulin Subcutaneous Human – klhw 20%. This is something I would receive this once a week (versus the once per month with the IVIG’s).

A subcutaneous injection is a method of administering medication. Subcutaneous means under the skin. In this type of injection, a short needle is used to inject a drug into the tissue layer between the skin and the muscle. Medication given this way is usually absorbed more slowly than if injected into a vein, sometimes over a period of 24 hours.

With this subcutaneous injection, I am now able to administer the drug to myself, without needing the services of a nurse. On the day of my treatment I do the following:

·       I load the drug into a syringe.

·       I then connect tubing that has 3 short needles on it.

·       The syringe is then attached to a pump.

·       I then inject the 3 needles (into my belly, arm, legs…. anywhere I could grab some loose/pinchable skin) and attached them with a clear medical adhesive to secure each needle…

·       and then I start the pump.

·       The pump runs about an hour.

I have gone through this process a number of times and I must say it is so much easier to do. It’s hard to believe that a process that was very difficult and stressful for me and my nurse is now so simple and stress free. God is Great!

Like I said at the beginning of this post…. I am very blessed… and I am so thankful for my good health and my wonderful life I have been given the opportunity to live. Now, I need to make the best of this opportunity... I need to strive to be the best person I could be…. I need to make sure I live life to the fullest… and most of all, I need to treat every day as a gift from God.

Here is a great song by Switchfoot that helps us strive to live life to the fullest… It’s called “More Than Fine” Enjoy!!! https://www.youtube.com/watch?v=xZWbl5a0NQA

"I came that they may have life, and that they may have it more abundantly" - John 10:10

More to come…

http://mantlecell.blogspot.com/

10 Years Since my SCT - Life is Truly a Precious Gift

 11/27/23 – Has it really been a decade since I had my stem cell transplant. WOW!

I have so much to be grateful for. I have such great family and friends… and the icing on top is I now have 3 grandchildren… a 4-year-old, a 2-year-old and our recent addition is only one month old. All these wonderful life happenings have been made possible by blessings from above and the fantastic support of all the medical people (doctors, nurses, etc…) that have guided me to a very happy health outcome.

Is my health perfect? Of course not. I’m 62 years old, been through chemo 3 different times, had a SCT, have had numerous challenges that have arisen throughout my treatments… but as I often say, the best side effect I have is that I’M ALIVE!

There are two health issues that I have been facing.

1.       My immune system needs to be boosted with IVIG’s. I have tried to reduce the number of these infusions I get, but it’s become fairly clear that I need to have these monthly. Anytime I did it less frequent, my immune system (igg levels) would drop and I would often get infections. When you think about it, this is such a small thing when you consider all that I have gained.

2.      I do experience some lightheadedness from time to time. It usually happens when I am working in the yard doing the things that home owners do. We are still trying to understand why this is happening, but we have identified via a recent echocardiogram that my heart is a little weak. It’s nothing urgent, but it is something that I will be have further tests on in the coming month. I, of course, I will keep on top of this and do all I need to do to get to the bottom of this. This is just another possible side effect that I need to address. I am confident all will be fine.

With this said, I am on a never-ending mission to bring joy to others as well as finding time to enjoy life for myself. Recently, I started playing music at local restaurants, breweries, bars, etc… and I am having a blast doing it. It all comes down to life being just too precious a gift to waste. So, when I am feeling good, I make sure I take full advantage of it. Whether it’s rolling on the floor and wrestling with one of my grandchildren or playing my guitar… I try to make the very best of each day.

Here is a link to a great song by Tim McGraw on this subject. It’s call “Live Like You Were Dying”. Enjoy

https://www.youtube.com/watch?v=v6NS7wrGItg

The LORD is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving. Psalm 28:7

More to come…

http://mantlecell.blogspot.com

A Happy 15 Year Anniversary

 07/17/23 – It is so hard to believe that it has been 15 years since my first Mantle Cell Lymphoma diagnosis.  On July 17, 2008, I was 47 years old… told that I had an aggressive cancer called Mantle Cell Lymphoma… a cancer that had a track record as being very difficult to treat… but next came meeting Dr. Andre Goy… being accepted in his clinical trial… as we fast forward through 2 relapses, a stem cell transplant… and here I am, at the age of 62… Mantel Cell Lymphoma sitting it the distance of my rear-view mirror… and now, 15 years later I have been gifted the joy of meeting 2 grandchildren with one more on the way… I have been gifted the many more years with my beautiful family and wonderful friends… Do I dare say that I am actually thinking and putting plans in place for transitioning into retirement in a few short years??? This is something that I have always been hesitant to say out loud, thinking I would be counting my chickens before they hatch… but the reality is I am healthy and feeling great… I am so thankful for everything I have… I feel so blessed… I truly know all I have is gifted to me from God.

Here is a great song by Chris Tomlin that helps remind us of all the gifts from God… It’s called “Gifts From God” Enjoy!!! https://www.youtube.com/watch?v=cfLGfuINnG4

“Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow." — James 1:17

More to come…

http://mantlecell.blogspot.com/

Sinus Surgery Was a Walk in the Park… or NOT… CRASH!!!

 4/30/23 – On Thursday, March 23^rd I had my sinus surgery to clear out my inflammation, repair a deviated septum and some other work… all with the hope of repairing my diseased sinuses and reduce the number of infections I have be getting over the years. After the first couple of days following the surgery, I was feeling much better than expected… so much so that on Saturday, March 25^th, I mention to my wife that “this sinus surgery is a walk in the park”.  Well, as we all know, it’s never good to count you chickens before they hatch. Around 4:00 AM Sunday morning, I woke up and went to the bathroom… like men my age tend to do. After I was done with going to the bathroom, I felt a little dizzy and passed out. To make matters worse, I was next to our shower with a glass door… and I fell through it, breaking the glass in a million pieces. The next thing I remember was regaining conscious, half on the floor of the bathroom and half on shower stall floor, covered with glass. Lucky for me, it was one of the newer shower doors and it didn’t break into sharp glass that would have made matters way worse.

The next things I remember were my wife screaming, my next-door neighbor, who is a state trooper, checking me out to see what damage I had done to myself, a team our paramedics attending to me, loading me in an ambulance, and a long ride to Morristown Hospital. When all this was done, I was in the emergency room hooked up to monitors to see what the heck happened. After hours of tests and scans there wasn’t anything that explained what happened. I did not have a heart attack, my blood pressure was normal, my heart and oxygen rates were normal, the scans of my head, sinuses and brain were clear, an ultra sound of my cardiac artery was clear.  I was put on a heart monitor for a 24 hour period, and that too came back normal. I guess it was another case of me going though something that wasn’t explainable.

When I got home, I went back to my normal activities and I haven’t experienced anything that would cause concern.

As far as my sinus go, I have not had any infections since the surgery. This leaves me very optimistic that we may have solved my never ending upper respiratory infections.

So all and all, I feel the sinus surgery was a success. It’s just that I guess I like to keep things interesting with the added drama I create. In truth, my wife never really liked that shower door… there are probably far easier ways of getting it replaced.

I will continue to have my monthly IVIG’s for a little while, but my hope is that I won’t need to get them at some point soon.

This whole event could have been so much worse and I just that thank God enough for always looking out for me.

Here is a link to a wonderful song prayer about how God looks after us: https://www.youtube.com/watch?v=YNd-PbVhnvA&list=RDYNd-PbVhnvA&start_radio=1

It’s called “See a Victory” and it’s performed by Elevation Worship.

Enjoy!

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

For everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith. 1 John 5:4

More to come…

http://mantlecell.blogspot.com

IVIG’s and Sinus Surgery

 3/7/23 – It’s been a while since I posted a heath update. Overall, my health has been good, but I do continue to get sinus, and upper respiratory infections. As a matter of fact, I am on my 12^th consecutive round of antibiotics. It seems as soon as my I take my last pill… the infections are back within a day.

Apparently, this is being caused by a couple of factors.

My igg level: I continue to get my monthly IVIG. It has produced some promising results. In a recent blood test, my igg level was 837. This is the best it’s been in years, but my body is not maintaining antibodies. My Abs CD8 Suppressor is high (2,531) and my % CD8 Pos Lymph is also high (64.9%). Based on these numbers, my doctors feel I need to continue the monthly IVIG’s.

Inflamed Sinuses – I had a CT of my sinuses and it was discovered that they are very inflamed. My ENT doctor believes that one reason my infections have been ongoing is that they truly never clear from my sinuses due to all the inflammation that I have. Based on this we have decided that I will be getting sinus surgery. The surgery is scheduled for March 23^rd.

Between the IVIG’s and the sinus surgery, I am hopeful that I am on the right track towards normal… where I will not need to be on these never-ending rounds of antibiotics.

My adventure with Mantle Cell Lymphoma started when I was 47 years old. In a week I turn 62. I can say without any hesitation that I am truly blessed. My present and future continues to look bright.

 Here is a link to an awesome song the fits well with the crazy time we live in. It’s by Matt Maher and is called “Common Ground”.

Enjoy!

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

“To the choirmaster. A Psalm of David. O Lord, you have searched me and known me! You know when I sit down and when I rise up; you discern my thoughts from afar. You search out my path and my lying down and are acquainted with all my ways. Even before a word is on my tongue, behold, O Lord, you know it altogether. You hem me in, behind and before, and lay your hand upon me.” Psalm 139:1-24

More to come…

http://mantlecell.blogspot.com

9 Years Since My SCT – A Time to Give Thanks!

 11/27/22 – No way… has it really 9 years since I had my stem cell transplant? When I look back, it was the day before Thanksgiving. On Thanksgiving Day, my wife and two daughters spent the day with me in the hospital. They brought Thanksgiving dinner to me… sure, I really didn’t have much of appetite…  but what we shared was one of my best Thanksgiving memories. It’s times like these when you realize just how blessed you are and when you look up to God and say Thank You!!!

 Since that day, the blessings have continued. I’ve seen both my daughters get married… I’ve been blessed with two grandchildren… and as I sit here, I can say that the only thing that continues to be a challenge for me is my immune system. I continue to receive my monthly IVIG’s but it has become very apparent that they haven’t produced the results I had been hoping for.

Recently, I seem to get sinus or upper respiratory infections fairly often. This is followed by me going on antibiotics. Throughout the course of antibiotics, I’ll start to feel better… but once I take my last pill, I start to feel sick again. I am up to six consecutive rounds of antibiotics. To add on top of all this, I have had COVID twice this year… in July and in November… and I am up to date with all my boosters.

Of course, I knew that when I started with my IVIG’s that it would be a bit of a process and may require some tweaking. I guess I have to wait and see what my next set of blood tests reveal, which should be sometime after the new year.

Saying all this, for a person who has had MCL 3 time (2008, 2013, 2015) and someone who had a SCT 9 years ago… as I said at the beginning of this post… I am very blessed and I have so much to be thankful for. One of the great things about the anniversary of my SCT is that it always falls close to Thanksgiving. It is a great reminder to me on how thankful I am for all my blessings.

Here is a link to an awesome song the fits well with the Thankful theme of the season. It’s by David Crowder called “Thanks Giver”.

Enjoy!

 https://www.youtube.com/watch?v=nxDKchUybN0

“You will be enriched in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God.” 2 Corinthians 9:11

More to come…

http://mantlecell.blogspot.com

It's Been Two Years Since My Last Scans - All is Great!!!

 10/21/22 – I just can’t believe that it’s been two years since my last scans. This is the first time I’ve gone this long between scans… and I guess it was for a great reason, my doctors are very confident that my health remains good… and they are 100% correct. My scans showed that all is clear. Certainly, God is Good!

To add to my good news, my igg level is at 763… which falls within the normal range. I guess my monthly IVIG’s are working. God is Great!

Dr. Leslie’s only instructions to me were to get my flu shot (which I did get already), keep up to date with my COVID vaccinations (which I went to get as soon as I left her office) and to enjoy life… especially my two beautiful grandchildren (I certainly plan to do that).

I truly have so much to be thankful for.  Although, it can be difficult ay times, you can never go wrong when you put your trust in God. Here is a like to a f=great song by Chris Tomlin, with some help from NEEDTOBREATH, called “Power”

Enjoy!!! https://www.youtube.com/watch?v=gCVLrAszuig

“The LORD is my strength and my shield; my heart trusts in Him, and He helps me. My heart leaps for joy, and with my song I praise Him” (Psalm 28:7).

More to come…

http://mantlecell.blogspot.com/