Giving Thanks on My Happy 1st Birthday

Thanksgiving Day: 11/27/14 – Today I am joyfully celebrating my 1 year birthday and there could be no better day for this to land on than Thanksgiving. One year ago I had my stem cell transplant and it is simply amazing how so much has changed since then. I am healthy, feeling strong and living life as if I was never sick a day in my life. Last year I spent Thanksgiving in the Hospital… this year I will be celebrating this wonderful double holiday with my family.

To date, all my scans are clear and I am down to only taking 3 medications (valacyclovir, pencicillin and sulfameth).  On December 4^th I will have a bone density test, a pulmonary test and I will be given a number of vaccination shots. This should take me from an infant’s immune system to one of a big boy.  

My adventures with mantle cell lymphoma has been one heck of a ride. It has taken me many places… it has introduced me to many fantastic people… it has provided me many new experiences… it has taught me about keeping things in perspective… and it has greatly increased my faith and love of God. I truly have so much to be thankful for. Certainly every day is a blessing.

On this Thanksgiving Day I am thankful for my health, thankful for the support and love of my friends and family, thankful for my talented and compassionate medical team, and… believe it or not, I am thankful for the journey. This adventure has had profound impact on me and all those around me.

Going forward there is only one thing I know for sure… it is that I have no idea where life goes from here. With that said it is important that we take life one day at a time and we make the most of every moment.  

May your lives be full of faith, hope, happiness, love and good health.

Happy Thanksgiving!

“With the loving mercy of our God, a new day from heaven will dawn upon us. It will shine on those who live in darkness, in the shadow of death. It will guide us into the path of peace."

Luke 1:78-79

More to come…

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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 17^th 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…

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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 16^th with me getting the results on June 20^th.

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…

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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…

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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 15^th  

Be joyful in hope, patient in affliction, faithful in prayer

Romans  12:12

More to come…

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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:

https://www.youtube.com/watch?v=y6Sxv-sUYtM

May God Bless you all

My next appointment at the Cancer Center is Monday, March 17^th (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…

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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 6^th.

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…

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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 19^th. 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 18^th.

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

Psalm 107:1

More to come…

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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 11^th.

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…

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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 4^th) 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 4^th.

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…

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Day +57

1/23/14 – I had my normal visit on Tuesday, January 21 and all my counts were looking good except that my immune system was a little low. We have these things called “GA” levels and apparently mine are lower than they should be. To address this on my next appointment on Tuesday, January 28^th I will receive an IVIG infusion. I had this once before back in 2010. It is a blood infusion that gives a boost to the immune system. Here are some details about an IVIG:

• Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
• Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
• Inflammatory and autoimmune diseases.
• Acute infections.

Last time I had this I only needed to be infused once to get things back to normal. I guess time will tell if that will be all I need this time.

Even with the need for the IVIG, I am feeling good.

My next appointment at the Cancer Center is Tuesday, January 28^st.

In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety.

Psalm 4:8

More to come…

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Day +50

1/16/14 – Could it be that 50 days have a passed since my stem cell transplant? It sure has.

Here I sit, feeling pretty well, my counts are doing great, my creatinine level is moving in the right direction (last check it was 1.5) and the counts for virus known as CMV is also improving. On top of that I have had no evidence of any graft versus host disease.  At this point I must say things are looking pretty good for me. In speaking with my doctors and nurses, the main concern I face is germs, bacteria and sick people in general. Based on this I still need to be very careful. I have come so far that it would make no sense to risk venturing out and exposing me to these things that could bring me harm.

There is the 100 day mark, which is often referred to as being a huge milestone for stem cell transplant patients, where I can start pulling back on some of my self-imposed limitations. In speaking to my doctors they feel that at that time we could start to consider when I can begin resuming some of my life… like working, going to church, eating out at restaurants, hanging out with friends… but I do not want to get ahead of myself being I still have 50 days to go and who knows what I may encounter between now and then?

I won’t lie to you; I am getting a little antsy and would love to get back to life as usual… if there really is such a thing. I know that I must be patient at this time so in the meantime I will read, play my guitar, watch movies, blog, communicate with friends and, most importantly, avoid getting sick over the next 50 days.

My next appointment at the Cancer Center is Tuesday, January 21^st.

so that you may live a life worthy of the Lord and please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and giving joyful thanks to the Father, who has qualified you to share in the inheritance of his holy people in the kingdom of light.

Colossians 1:10-12

More to come…

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Day +41

1/7/14 – Good news…  my Creatinine level came down a little. It is now 1.7. I did get IV fluids yesterday but I was able to avoid getting a PICC line for now.

At yesterday’s appointment I also learned that I have tested positive for a virus known as CMV. Here is a little info on CMV:

• Cytomegalovirus (CMV) is one of the herpesviruses. This group of viruses includes the herpes simplex viruses, varicella-zoster virus (which causes chickenpox and shingles), and Epstein-Barr virus (which causes infectious mononucleosis, also known as mono). CMV is a common infection that is usually harmless. Once CMV is in a person's body, it stays there for life. Among every 100 adults in the United States, 50–80 are infected with CMV by the time they are 40 years old. Most healthy children and adults infected with CMV have no symptoms and may not even know that they have been infected. Others may develop a mild illness when they get infected and have the following symptoms: fever, sore throat, fatigue, and swollen glands. But since these are also symptoms of other illnesses, most people don't realize that they have been infected with CMV.

 I have been put on an antibiotic to address this virus.

Another piece of interesting information I learned yesterday is that as of the last test my system is now 53% of the donor’s. This is a sign that my immune system is headed in the right direction.

 My next appointment at the Cancer Center is Thursday, January 9^th.

For the word of God is alive and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart.

Hebrews 4:12

More to come…

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Day +38

1/4/14 – It appears that controlling my Creatinine level will take more than me drinking massive quantities of water. The results from yesterday’s check-up have my counts going in the wrong direction. My meds have been adjusted and hopefully that will help puts thing in the right direction but I was told that if that doesn't work I will need to start getting IV fluids at home. This would mean that I would need a PICC line installed. Getting a PICC line has always been something that was a possibility in the case that I needed to address any challenges that may come my way in the course of my post stem cell transplant. I am certainly willing to do whatever my medical professionals prescribe.

So you may be wondering exactly what is Creatinine and why it is an issue?

Creatinine is a breakdown product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass). It is measured in mg/dl. The normal range falls within 0.3 to 1.5 mg/dl. My latest test returned a Creatinine level of 2.0. This level is significant because it is an important indicator of renal health/kidney function.

Other than my Creatinine levels I am feeling well

My next appointment at the Cancer Center is Monday, January 6^th.

The person without the Spirit does not accept the things that come from the Spirit of God but considers them foolishness, and cannot understand them because they are discerned only through the Spirit.

1 Corinthians 2:14

More to come…

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