11 Years Since my SCT – Happy Thanksgiving!!!

 11/27/24 – On Wednesday, November 27^th, 2013, I had my stem cell transplant. It was a day of where my body was doing all it could to accept my new immune system. I was exhausted, feeling disoriented and experiencing some riggers/shakes. The day was a bit of a blur, and I slept most of the day. When I work up the next day, it was Thanksgiving. My wife and daughters were with me. They had prepared a Thanksgiving meal for us to share. Yeah, me and my family celebrating Thanksgiving in a hospital room…. my family dressed in hospital gowns and masks and me in my pajamas with very little energy. I didn’t have much of an appetite. I would end up eating just a few nibbles of food, I could have easily slept the day away… and in truth, it is one of my fondest memories of Thanksgiving and it was one of the best meals I have ever had. It was a day of us all truly being thankful… thankful for us, for our family, for the loved we shared over the years… and thankful for this life saving procedure I had the day before… and thankful for the many wonderful years we would share in the future.

It is now 11 years since we shared that memorable Thanksgiving meal… and life has given us so many blessings.

Coincidentally, the 11^th anniversary of my stem cell transplant falls on the Wednesday before Thanksgiving and the memory of the day 11 years ago come rushing back to me. It’s hard to imagine the life my family would have had if I chose to not have my transplant.

I was first diagnosed with mantle cell lymphoma on July 17, 2008… that’s over 16 years ago. It is truly amazing how it has gone from something that was a death sentence… to something that is now considered a very treatable disease.

I originally starting writing blog as a way to share my cancer journey with friends and family. I have thankfully hit a point in my life where I, quite honestly, don’t have anything to add about my Adventures with Mantle Cell Lymphoma. With this said, this will be my last posting for a while. Certainly, I will share any updates about my health if there is anything new to report.

I would like to close this post with thanking my wife, daughters, family and friends, doctors, nurses and all the other people who have been a part of my heath journey, for all the support I have received from them.

Happy Thanksgiving!!!

Here is a link to a song called “Tunnel” by Third Day for those of you who are going through your own health journey: https://www.youtube.com/watch?v=S7V5t9ECZXo

"Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!" Psalm 107:1

More to come…

http://mantlecell.blogspot.com

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/