Thursday, July 17, 2014

Happy 6 Year Anniversary

7/17/14 – I simply cannot believe that 6 years have passed since I was diagnosed with Mantle Cell Lymphoma. Then again, when I look back at everything I have experience since July 17th 2008, I find it hard to believe that I squeezed all this into 6 short years. Even though I have been told I have cancer, was treated for it, relapsed, was treated for it again and then added in a stem cell transplant for good measure, I can say without any hesitation that I have been blessed. From the many great doctors and nurses who helped me… the many family and friends who have been there for me… and how well I have responded to everything, how can I look at this any other way?

I did have my scans in June and everything looks fantastic. I have my energy back, I am back at work, and I am happy to say that I am playing my guitar regularly. I feel like one of those t-shirts you get and the Hallmark stores that say “Life is Good”.

Sure, no one knows what tomorrow has in store for us. The best thing anyone can do is to forget about that past (being there is nothing we can do about it) and not worry about the future and simply live for today.

For by grace you have been saved through faith. And this is not your own doing; it is the gift of God
Ephesians 2:8

More to come…

Thursday, May 22, 2014

Day +176... First Immunization Shot

5/22/14 – I had my 3 week check-up today and all is GREAT!!! All my counts are right where they need to be and I continue to feel good. I hit another great milestone today. I no longer need to take Prograf and Magnesium plus Protein. Many of my restrictions can now be removed. I actually have been given the OK to have a beer. I am not a big drinker but I must say I am looking forward to enjoying a cold beer. The one thing that seems to be a big concern is exposure to the sun.  As a precaution I apply sun block each day before I head off to work.  

Also today I received my first immunization shot. It was the pneumococcal vaccination. I guess it is kind of like getting a flu shot. It was really no big deal.

I met with Dr. Rowley today. I think he was truly surprised on how well I am doing.

Next on my "things to do" is to get my periodic PET scan, which is scheduled for June 16th with me getting the results on June 20th.

my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold and my refuge, my savior; you save me from violence.  I call upon the LORD, who is worthy to be praised, and I am saved from my enemies.
2Samuel 22:3-4

More to come…

Friday, April 18, 2014

Day +142… Life goes on

4/18/14 – In a blink of an eye I have been back to work for 13 days. Sure there are times I am exhausted at the end of the day, but it is a good tired. There are moments when I feel like I never left. It is amazing how quickly we can get back to business as usual. I just feels so good to be back.

The great news for me continues to be that my health has been very good, my counts are where they should be and I have no signs any challenges (like GVHD).

With me feeling well I will not be updated this blog as often. I certainly will provide updates on any changes to my health, updates on scans, status on receiving immunizations, and anything else that I think there will be interest in hearing about.

There is no doubt that I have been very blessed with a stem cell transplant that has gone very smoothly.

With today being Good Friday I would like to acknowledge all of the great people who have made sacrifices for us.

For God so loved the world that he gave  his only Son, so that everyone who believes in him might not perish but might have eternal life.
John 3:16

More to come…

Tuesday, April 1, 2014

Day +125... Back to work

4/1/14 – Can it be 125 days since my stem cell transplant? It is truly amazing how things look after you have been through them. When we are faced with trials and tribulations it is hard to envision a time when they have past. If someone said to me to picture 125 days into the future it would have put me a lot more at ease but we cannot see what future holds for us. We must have hope, faith and trust in God that all will be fine.

Yesterday I had my normal biweekly visit at the John Theurer Cancer Center at Hackensack University Medical Center and all my counts were excellent. I am very confident that I can start to get re-acclimated into my life. I am happy to say that I will start back at work tomorrow. Sure, I will have some limitations/restrictions on me like: limited exposure to crowds and no travel for a little while, but I am truly very excited to get back to work.

My next appointment at the Cancer Center is Monday, April 15th  

Be joyful in hope, patient in affliction, faithful in prayer
Romans  12:12

More to come…

Friday, March 7, 2014

Happy Day 100

3/7/14 – It is Day +100… Woohoo!!! This morning when I awoke there was a huge rainbow in the sky, all the snow had melted, the birds were all singing happy songs, little bunnies hopped about my yard in joy and all my hair had returned… well, no that’s not what really happened and to be honest I am really unsure what exactly is supposed to happen on Day 100. It certainly is a marvelous milestone for me to have reached. There is no doubt I have much to be joyful about.

The first 100 days after a stem cell transplant are significant because they carry highest risk of having the worst reactions to the transplant. I have been so very blessed to have made it through my first 100 days with flying colors. To add to my blessings, at yesterday’s checkup I was told that my blood counts continue to be great. I received more good news when I learned that I am now 100% of my donor.

As I think back about a year ago... I was doing so well on Ibrutinib and I was very leery of having a stem cell/bone marrow transplant. I tried my best to get educated about it but the more I read the more nervous I became. This made me want to seek out an alternative to having a transplant. I took it as far as asking Dr. Goy if there was any way to avoid having a transplant. I even suggested that I could maybe stay on Ibrutinib forever and possibly never need a transplant. It was then that Dr. Goy assured me that the transplant was the way to go and that all would be fine. Well, he was right.

So now that I made it through 100 days what’s next for me? Well, I think this will be a bit if a moving target but these are things I know so far:
·         I will continue to be monitored periodically to make sure my counts are good and that I am free of any and all things viral.
·         I will be slowly taken off of my medications.
·         I have been given the go ahead to resume working the first week of April with some limitations that my doctors will communicate to my work.
·         At around day 180 I will start getting my immunization shots.
·         I can begin to get out more but still need to be very careful. Reaching this 100 day milestone does not mean I am ready to start giving hugs and shaking everyone’s hand. I still need to be couscous of germs and infections.
·         Not specific to a stem cell transplant but I simply need to live a healthy life. This is something we should all do.

It is just so hard for me to me to put into words just how happy and grateful I am for all the good in my life and for all the people who have supported and prayed for me. 
God is Good! God is Great!

Today I will celebrate my Day +100. Please join me. Here is a link to a fun song called “Happy” to get us started:

May God Bless you all

My next appointment at the Cancer Center is Monday, March 17th (which happens to be my birthday).

Great is our Lord and mighty in power; his understanding has no limit.
Psalm 147:5

More to come…

Friday, February 21, 2014

Day +86

2/21/14 – I received that results of my scans today and all is clear. YES!!! Also, all my counts were good. Based I these good results I no longer need to take Fluconozole. In addition we are able to reduce the doses I take of Prograf and Ursodiol. Everything is defiantly moving in the right direction for me.

Another piece of good news was that my check-up appointments will go from weekly to every other week. This is a huge blessing being we are having such a terrible winter. The clearing of the driveway and driving in the bad weather has certainly been a challenge. Unfortunately because I am not allowed to be out in the cool for extended periods of time and I am not supposed to be exerting myself, the snow clean-up has fallen on my wonderful wife. There have been neighbors and friends who have helped, which we are very thankful for.

Going forward the biggest concern my doctors have seems to be about me staying clear of sick people. Sure it is now OK for me to start to venture out when the situations are controlled but with it still being flu season I still have to be very careful.

My next appointment at the Cancer Center is Thursday, March 6th.

Look carefully then how you walk, not as unwise but as wise, making the best use of the time, because the days are evil. Therefore do not be foolish, but understand what the will of the Lord is.
Ephesians 5:15-17

More to come…

Wednesday, February 12, 2014

Day +77

2/12/14 – I had my weekly check-up yesterday and my counts continue to be very promising. The only thing that has caused me some minor discomfort is that I have developed phlebitis in my left arm. I guess you can only use a vein so many times for drawing blood, infusions, CT Scans, etc… before it gets mad and starts to scream at you. I have been putting on hot compresses and started taking an antibiotic called Kaphlex to treat this. This gets added to all my daily medications which includes: Prograf, Penicillin V Potassium, Fluconazole, Valtrex, Bactrim, Folic Acid, Ursodiol, Magnesium plus Protein, Compazine (taken as needed), and Crestor. Thanks to my wife Sue who makes sure I take the right meds at the right times.

Yesterday I also was given the second half of my IVIG infusion. I seem to have handled this well again. Sitting in the infusion room I realized just how lucky I am. So many people have bad reactions to infusions.

With me being more than three quarters to the magic day 100, I am very much looking forward to getting my life back on track. Saying this, I do have some big things coming up before that. I have my first set of scans since the stem cell transplant. This is scheduled for Wednesday, February 19th. We also are planning to start adjusting the doses of medication I am given to see if it brings on any signs of Graft to Host Disease. It is my understanding that we want to see a little bit of it but we certainly do not want me to get a bad case of it.

I am just so blessed with how well things have gone for me so far and I am so very thankful for all the support I have received from my family and friends. Especially a huge THANK YOU to my wife Sue, who has been there every moment of this journey with me.

I would like to wish a Very Happy Valentine’s Day to my wonderful wife.

My next appointment at the Cancer Center is Tuesday, February 18th.

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

More to come…