Biopsy Scheduled

2/20/13 – Here is a quick update on my schedule.  I have been officially scheduled for my biopsy on Monday, February 25^th and I all get my results on Monday, March 4^th.

It is very easy for me to jump to the conclusion that my Mantle Cell Lymphoma is back. With the mass being in the exact same spot as one of original tumors, it is not completely crazy to think this way. On the other hand, I have to say that I feel great. I recently started watching what eat and ended up losing over 50lbs. Also, I have been very energetic over the past few months. How could I be sick again? It makes no sense to feel so good and still be sick, right?

BUT… in truth I will only know for sure when I am given the results from the biopsy.

At the end of the day, I need to keep calm and leave all of this in the hands of God.

I know God will take care of me.

Then they cried to the LORD in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven. Psalm 107:28-30

More to come…

http://mantlecell.blogspot.com/

My Adventures Continue…

2/11/13 – I went for my CT Scan today. I will get the results on the 15^th. Over the years I have gotten very good and keeping myself busy as I wait for my scan results. There is no doubt that the wait could simply drive you crazy. I look at it like this; if I can only keep my mind occupied the time will pass before I know it.

For some reason these results have me more on edge than in the past. This is probably because I have recently learned that a couple of the people that were in the Mantle Cell study that I am in have fallen out of remission. Well, I can only hope and pray that all is fine with me.

2/15/13 – My wife and I arrived at the John Theurer Cancer Center at Hackensack University Medical a little early. I was feeling very relaxed and confident. I got to the lab for my blood work I was in and out in no time. We than proceeded up to Dr. Guy’s office and we were escorted to a checkup room right away. Could it be that I was going to get through my appointment in less than an hour? NO CHANCE!!!  Dr. Goy must have been pulled in to an emergency and we ended up waiting well over an hour. I never complain about waiting for Dr. Goy because I would much rather waiting than being the person he was called away to attend to.

When Dr. Goy finally made it to us his first questions to me were: “Do you feel pain?”, “Do you have a cough?”, “Are you having difficulty breathing?”

These are not the type of questions that he usually starts off with. It did make me think. I was also sensing that my wife Sue was not comfortable where this was leading. Dr. Goy then explained that in reviewing my scans that they did see a mass in my chest that concerns him. In addition, it was in the exact spot of one of my original tumors. The mass measured 5 centimeters. Dr. Goy said that he wanted me to get it biopsied ASAP and he wanted to see me back within the next 2 weeks. He also, stressed, for us not to worry. We need to take things one step at a time. AND, if this end up to be Mantle Cell Lymphoma, they have excellent treatments available to me. More than likely I would be pulled into another study group... BUT let’s not get too far ahead of ourselves. I need to first get the biopsy and meet with him to discuss the results. I will be getting contacted by the hospital with when the biopsy is scheduled over the next day or so and my follow-up with Dr. Goy will be on Tuesday, February 26^th.

I guess my abilities to keep myself busy and not drive myself crazy waiting will certainly be tested over the next couple of weeks.

The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid? Though an army encamp against me, my heart shall not fear; though war rise up against me, yet I will be confident. (Psalm 3)

More to come…

http://mantlecell.blogspot.com/

Sailing Heals

10/5/12 –With my last post I wrote about an event sponsored by the John Theurer Cancer at Hackensack University Medical center called “Celebrate Life and Liberty”. As each survivor was registered for the event their name was placed in drawing where the winner would get to go sailing with Dr. Goy. Anyone who has read this blog knows that I think Dr. Goy is a great guy and should not be surprised that I was very excited to hear that I was one of the winners. As I learned more about this sailing event I was very impressed what it is all about. There is a non-profit organization called Sailing Heals. Sailing Heals’ essential mission is to take individuals and their families and caretakers out on the water for a beautiful day of sailing and respite. Sailing Heals matches owners of beautiful boats (sailing or motorized) with patients and their caretakers and takes them out for half-day sails, sometimes followed by a lunch or water-side picnic.

Our outing set sail out of the South Street Seaport in New York City off of the a boat named the Pioneer. There were about 30 survivors along with their friends and families. I was there with my wife Sue. We all had a great time. We shared our stories while we took in the beautify sites of NYC. In the end we all made new friends and there is no doubt that Sailing Heals’ mission was accomplished… we all had a wonderful day where we all forgot about life’s problems.

I want to thank the John Theurer Cancer Center at Hackensack University Medical Center, Dr. Goy and most importantly, Sailing Heals for a great day.

For more information on Sailing Heals, here are links to their website and Facebook page

http://www.sailingheals.org/

http://www.facebook.com/sailingheals

Matthew 25:40 - ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

I am planning to post my next update in February after I get my scan results.

More to come…

http://mantlecell.blogspot.com/

Let’s Get Together and Feel Alright

9/30/12 – Today was the BIG event hosted by the John Theurer Cancer Center at Hackensack University Medical Center: The 4^th Annual Celebrate Life and Liberty.  The event is intended to celebrate survivorship and give inspiration and support to those in the cancer community who are still in treatment or recovery. This free celebration was held in Liberty State Park, NJ. Attendees explored a wide-range of interactive activities for adults and children, such as yoga and there were musical performances by a number of the cancer survivors and the cancer center doctors and nurses. In addition, more than 15 cancer advocacy organizations provided information about their services for all aspects of cancer care, support, and survivorship.

The main feature of this event was a special performance by the legendary Aretha Franklin. She was amazing and performed for about 90 minutes.

Personally, the biggest part of the event was that I was one of the cancer survivors who performed on stage. I also had my daughter Alli on stage with me. We played  Bob Marley’s “One Love/People Get Ready”. I decided on that song because I felt it captured the spirit of the event. For cancer survivors to say: “Let’s get together and feel alright.”  just seemed so awesome to me. By no means are Alli and I professional performers but we certainly had a blast. Having this experience, with my daughter of celebrating my health in front of others, is something I will remember forever.  My daughter Jill taped our performance with her iPhone and it is now available on YouTube. Below are links to our time on the stage. I hope you enjoy it.

Video of us being introduced: 

Video of our performance: 

And because I like all the readers of this blog so much, here is a video of one of Aretha’s performances at the event: 

It was truly an amazing event and it was even better to see many people I went through my treatments with. It was great to see that everyone was doing so well.

Psalm 100:1-5

Make a joyful noise to the Lord, all the earth! Serve the Lord with gladness! Come into his presence with singing! Know that the Lord, he is God! It is he who made us, and we are his; we are his people, and the sheep of his pasture. Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name! For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations.

I am planning to post my next update in February after I get my scan results.

More to come…

http://mantlecell.blogspot.com/

All is Well

8/13/12 – I went for my PET scan today. I am still feeling great and very confident that the test results will come back just fine. I continue to follow Weight Watcher and I am down a total of 45 lbs. When it comes to weight loss with someone who is a cancer survivor I am finding that most people’s first reaction is to think that there is something wrong. I can honestly say that I know my weight loss is due to the change in my diet versus being sick and I know this because with everything I went through when was sick I did not experience weight loss due to the treatment or due to the disease. To hit my maximum BMI (Body Mass Index) I need to lose another 8 lbs.

8/20/12 – I met with Dr. Fieldman today (Dr. Goy was busy in the hospital) and she delivered the happy message that All is Well. It seems that the mass that was seen on my CT scan is residual scar tissue. I do not have to get checked again for another 6 months which will be in February. My scans will be on February 11^th with me getting my results on February 15^th. This will be the first time since I was sick that I will not have to go through scans during the Christmas season. What I blessing that is. I am so thankful for how great God is to me and my family. I am looking forward to singing his praises at the “Celebrating Life and Liberty” event sponsored by the “John Theurer Cancer Center at Hackensack University Medical Center” which will be held on September 30^th. I have decided on what songs I will be performing… but I think I will keep it a surprise.

Psalm 69:30  I will praise the name of God with song, And shall magnify Him with thanksgiving.

Psalm 95:1-6 - O Come, let us sing for joy to the LORD; Let us shout joyfully to the rock of our salvation. Let us come before His presence with thanksgiving; Let us shout joyfully to Him with psalms. For the LORD is a great God, And a great King above all gods, In whose hand are the depths of the earth; The peaks of the mountains are His also. The sea is His, for it was He who made it; And His hands formed the dry land. Come, let us worship and bow down; Let us kneel before the LORD our Maker.

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If you are interested in reading other blogs similar to this, it would seem that I have drawn the attention of fellow bloggers. They have some pretty cool stuff that you may want to check out:

One blog is a Christian cancer blog. It also provides a list fellow Christians who author blogs detailing their cancer experience. Here is a link: http://advocateofhope.wordpress.com

Another blog/website that contacted me is “Lymphoma Info”. It contains a wealth of information. Here is a link: lymphomainfo.net

My next update will be in February after I get my scan results.

More to come…

http://mantlecell.blogspot.com/

Happy 4 Year Anniversary

7/17/12 – It was 4 years ago today when I was diagnosed with Mantle Cell Lymphoma. I remember like it was yesterday… the words coming out of the thoracic surgeon’s mouth, waiting to see the oncologist, Googling “Mantle Cell Lymphoma” on my Blackberry, reading all the negative things on the web and feeling that I had just been given a death sentence…

Now when you Fast Forward my life 4 years ahead you find someone with very little evidence of every being sick. PLEASE trust me when I say that being told you have Mantle Cell Lymphoma does not mean you have been given a death sentence. As I think about it, when I told I had mantle Cell it was more like a “Life Sentence”. I was sentenced to live my life, my hopefully long life, in a way that I truly see each day as a gift. Although I have never been one to see my cancer as a gift (if it was a gift I would ask for the receipt and return it) I truly believe that LIFE IS A GIFT. As cancer survivors we simply see it clearer than most others. We do try to make the best of each day.

As you may have seen on my last posting I have to go back for a PET scan because there was something showing on my CT scan in June. Although I am very confident that I am fine, this does bring in to focus that my Mantle Cell is a part of me forever. I will always have to be checked and pay attention to what my body is telling me so that I could have my brilliant doctors take care of whatever ever is going on. I recently have felt that I was taking my health for granted and was being a little lax with my eating habits so I decided to start eating healthier. I have been on Weight Watchers since April and have lost about 35 pounds. I feel GREAT!!!! YES, Life is a Gift, but it is probably a good idea to take care of such a great gift.

Psalm 118:24 – "This is the day which the Lord has made; Let us rejoice and be glad in it."

I truly find peace in music. Here are the lyrics to a beautiful song by the David Crowder Band called “Sometimes” that I think you will find peace in also. Enjoy!

"Sometimes"

Sometimes every one of us feels

Like we'll never be healed

Sometimes

Sometimes every one of us aches

Like we'll never be saved

Sometimes

When you've given up

Let your healing come

Till you're rising up

Let your healing come

It's your love that we adore

It's like a sea without a shore

We're lost in you, we're lost in you

It's your love that we adore

It's like a sea without a shore

We're lost in you, we're lost in you

Sometimes

Sometimes

It's like we'll never atone

For all the love we've known

Sometimes

Like in a smile or a song

When you feel love come

And that feeling's gone

It flies

When we've given up

Let your healing come

When there's nothing left

Let your healing come

Till we're rising up

Let your healing come

Where you go, we will follow

Where you go, we will follow

It's your love that we adore

It's like a sea without a shore

We're lost in you, we're lost in you

It's your love that we adore

It's like a sea without a shore

We're lost in your, we're lost in you

It's your love that we adore

It's like a sea without a shore

We're lost in you, we're lost in you

It's your love that we adore

It's like a sea without a shore

Don't be afraid

Don't be afraid

Just set your sail

And risk the ocean, there's only grace

Let's risk the ocean, there's only grace

Let's risk the ocean, there's only grace

Let's risk the ocean, there's only grace

It's your love that we adore

It's like a sea without a shore

We're lost in you, we're lost in you

It's your love that we adore

It's like a sea without a shore

We're lost in you, we're lost in you

Where you go we will follow

I'm on my knees

Where you go we will follow

Oh, God send me

Where you go we will follow

I'm on my knees

Where you go we will follow

Sometimes

Here is a YouTube link to “Sometimes”: http://www.youtube.com/watch?v=VSFoRKnD6Ss

I plan to post my next update after I get my PET scan results on August 20th.

More to come…

http://mantlecell.blogspot.com/

It Is Not a Matter of If, But When

After attending Dr. Goy’s MCL Symposium this past November,  I walked away with the following impressions:

• For one thing it seemed that I heard that it is not a matter of if, but when my Mantle Cell Lymphoma will come out of remission. 
• The other was that when it happens there are plenty of real cool drugs available that will be available to me. Bottom line, no matter what I will be fine. It is fantastic to know of all of the incredible medical advancements that have been made with this disease. BUT… I will say it would be awesome to never need to test out just how great they are.

Personally, I am feeling great. I even started Weight Watchers this past April and have dropped about 25 lbs. I plan to continue watching what I eat. My next challenge will be to exercise more.

6/11/12 – I went for my CT scans today. With a change to how CT scans are handled at Hackensack University Medical Center, we now have to show up a couple of hours early to drink our Readi-Cat2 Barium Sulfate Suspension Smoothie (something I kindly refer to as “sludge”). We used to be able to drink this starting the night before and finish it the morning of our scans. I think there was a challenge getting all the patients to follow the directions and drink it at the necessary times, so now we have to drink it when we get there. This does present an opportunity for everyone waiting for their scans to have some very interesting conversations on just how awful it tastes no matter what flavor they put in it. I actually very much enjoyed the time I spent in the Waiting Room with my fellow sludge drinkers. You would think that after how many times I have had to drink this that I would be used to the taste but I am not sure that will ever happen.

6/15/12 – I met with Dr. Mateo today (Dr. Goy was on Vacation, I guess he is allowed). With me feeling so well I fully expect this day to go well. Unfortunately, the results were not exactly what I was hoping for. Dr. Mateo stressed that there was nothing to get too worried about. 

The Radiology Consultation Report said the following: “There is a mild increased soft tissue density within the right pulmonary hilum, findings mildly more prominent when compared with prior scans of 6/13/11 and 12/12/11. If further assessment at this time is warranted, I would recommend correlation with a PET scan.”

Based on this Dr. Mateo would like me to wait a couple of months and then have a PET scan. I am now scheduled for a PET scan on August 13^th with a follow up appointment with Dr. Goy on August 20^th.

On a real cool note, The Cancer Center has asked me to perform at their annual event called “Celebrating Life and Liberty” held Liberty State Park at the end of September. For those of you who do not know me, I love playing guitar and singing. This will be a lot of fun for me. I just have to come up with some songs that will fit the event well. If anyone has any suggestions, please pass them on to me.

Exodus 15:2 The LORD is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father’s God, and I will exalt him.

With my next scan is scheduled for August 13th and my follow-up appointment with Dr. Goy being on August 20^th, my next update will be around August 20th.

More to come...

http://mantlecell.blogspot.com/