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…


Wednesday, February 5, 2014

Day +70

2/5/14 – Yesterday I had my weekly check-up and my counts continue to look good. Also, there are no longer any signs of me having CMV, so I no longer need to take medication for that, which is GREAT News!

In addition I was given the first half of my IVIG infusion. I seem to have handled that very well. I will get the remaining dose at my next appointment on Tuesday, February 11th.

With Day 100 just a month away, I am beginning to get excited about getting things back to “normal”. At least as normal as a MCL survivor with a stem cell transplant can be. 
In truth, maybe I am being challenged to be set apart and not normal. I guess it is some to think about.

Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.
Romans 12:2

More to come…


Wednesday, January 29, 2014

Day +63

1/29/14 – I had my weekly visit yesterday and was given the great news that I am now 92% of my donor. This is awesome progress for me. Also, all my counts continue to be doing well.
My planned IVIG infusion had to be rescheduled for next week (Tuesday, February 4th) due to a delay in getting an approval from insurance. Apparently these are fairly expensive and insurance companies often push back on doing them. The good news is that there is not a rush to get this done… as long as it happens within the next few weeks.

My next appointment at the Cancer Center is Tuesday, February 4th.

He sought God during the days of Zechariah, who instructed him in the fear of God. As long as he sought the Lord, God gave him success.
2 Chronicles 26:5

More to come…