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/

Physical Fitness And Its Impact On Cancer Treatment And Recovery

I know I said I wouldn’t have anything to post until my next scans in June but a reader of this blog reminded me of the importance of exercise during treatments. I recall Dr. Goy strongly encouraging his patients to exercise while in the hospital receiving treatment. He actually setup stationary bicycles in the hospital and wanted us to be on them 3 times a day for 20 minute intervals. Certainly he wasn’t looking for us push hard as if in a gym. He just wanted us to keep active. I will say this this really worked. Keeping active was such large part of the day while in the hospital that we actually figured out that 23 laps around the nurses’ station equaled a mile.

My new friend, David Hass has provided me with an excellent article regarding the benefits of exercise. I thought it would be great to share it with you. Here it is:

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Physical Fitness And Its Impact On Cancer Treatment And Recovery

In the wake of a cancer diagnosis, physical activity will most likely decrease as symptoms progress and days being to fill with doctor’s appointments and cancer treatments. Nevertheless, exercise is essential when someone is facing breast surgery, mesothelioma treatment, or any other type of cancer therapy.

Of course, physical fitness is not usually in the forefront of a cancer patients mind. Exercise requires strength and energy, two things a patient is unlikely to possess in great measure. Yet, exercise is just the thing to increase strength and boost energy levels. All the medical research points to numerous health benefits from cancer fitness regimens.

Among the general population, exercise may reduce the risk of developing certain types of cancer. For cancer patients, regular physical activity may decrease mortality rates and improve survival rates. Exercise has many physical benefits, and its role in emotional health is especially important for cancer patients.

Effective cancer treatment depends on several things, from a patients physical health to a treatments’ aggressive nature. Chemotherapy, surgery, radiation therapy, and other cancer treatments work because they aggressively fight growing tumors. But they often come with debilitating side effects: nausea, vomiting, diarrhea, anorexia, fatigue, brain fog, depression, and more.

Regular exercise during cancer treatment strengthens the body and provides the energy needed to combat cancer symptoms and treatment side effects. Exercise also reduces the side effects of long-term bed rest that is sometimes required for cancer patients: weak muscles, stiff joints, constipation, and skin sores.

A patients emotional state also affects treatment and exercise plays an important role here. Studies show that physical activity improves mood, reduces stress, enables relaxation, and encourages positive thoughts; all beneficial for the recovery and well-being for a cancer patient.

Most people can engage in some type of exercise immediately following diagnosis. Depending on how they feel from day to day, they can usually continue their fitness regimen throughout treatment and recovery. Nearly any type of movement is safe and possible for cancer patients, as long as it does not cause undue stress, pain, or breathing problems.

The National Cancer Institute (NCI), describes physical activity as an essential component of energy balance. Along with a healthy weight and nutritious meals, exercise has a tremendous influence on health for cancer patients and the general population alike. The NCI recommends 30 minutes of moderately to intense exercise on five days a week, or 20 minutes of vigorous activity at least three days a week.

Jogging, bicycling, dancing, and team sports are activities that many cancer patients can enjoy. Even those recovering from breast surgery or going through mesothelioma treatment can do gentle stretching, walking, light calisthenics, and yoga. Cancer patients should take advantage of exercise and its many benefits. Whatever its direct impact on treatment and recovery, physical activity can make all the difference in someones outlook and quality of life.

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David,

Thanks!!!  for sharing this wonderful article.

David's goal is to help others going through their battle with cancer. For more information go to his blog at: http://www.mesothelioma.com/blog

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Bless the LORD, my soul;

all my being, bless his holy name!

Bless the LORD, my soul;

and do not forget all his gifts,

Who pardons all your sins,

and heals all your ills,

Who redeems your life from the pit,

and crowns you with mercy and compassion,

Who fills your days with good things,

so your youth is renewed like the eagle’s.

Psalm 103:1-5

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My next scan is scheduled for June 11th and my follow-up appointment with Dr. Goy is on June 15th.

More to come...

http://mantlecell.blogspot.com/

It’s Beginning to Look a Lot Like Christmas

Every year my daughters ask me what I want for Christmas and every year I answer “Peace on earth”. If you think about it if you have your health, happiness and if you are surrounded by your friends, family and loved ones… what else do you need as you celebrate the birth of Jesus Christ.

This week I find out how I am doing with the health part.

12/12/11 – I went for my scans today. There has been a change how the barium sulfate contrast is given to us before a scan. For my past scans I would start drinking it the night before and finish it about 90 prior to the scan. Now we have to get to the Radiology office 2 hours before the scan and drink all the contrast there. It is certainly not as convenient but I am sure there was a good reason for this change.

12/16/11 – I met with Dr. Goy today and he gave me the excellent news that my scans were all clear. Now that is certainly a fantastic early Christmas present.  I am now looking forward to a great Christmas with my friends, family and loved ones. I wonder if I will also get the “Peace on Earth” I asked for?

As many of us are shopping and rushing about to get ready for the Holiday we often lose sight of the real meaning of Christmas. Here is a link to a song on YouTube that reminds us what Christmas is all about: http://www.youtube.com/watch_popup?v=OExXItDyWEY&vq=medium

I continue to be on a checkup schedule of every 6 months. My next scan is scheduled for June 11th and my follow-up appointment with Dr. Goy is on June 15th.

My next posting will be in June after I get my scan results.

Merry Christmas and Happy New Year to All

More to come…

http://mantlecell.blogspot.com/

2011 MCL Symposium

Anyone who had read this blog should know of the admiration, respect and gratitude I have towards Dr. Goy so when I received a phone call from one of his Research Nurses the other night, inviting me to the “2011 MCL (Mantle Cell Lymphoma ) Symposium” I immediately said “YES, I will be there!”.

This great event will be held on: Saturday, November 12, 2011 at The John Theurer Cancer Center in Hackensack, New Jersey and it will include experts from all over the world sharing their view of what the future looks like for Mantle Cell Lymphoma survivors like us.

So when you read: 

“Join Us as Internationally-Recognized Experts Share the Latest in Treating and Managing Mantle Cell Lymphoma" 

 Does this interest you? If it does, here is what the day will include:

2011 MCL Symposium Agenda: Saturday, November 12, 2011

8:00 AM to 3:30 PM

·         Complimentary registration, breakfast and lunch

SYMPOSIUM AGENDA

8:00 - 8:30 AM

·         Gathering & healthy continental breakfast buffet with smoothie station

8:30 - 8:40 AM Andre Goy, M.D., M.S., Chairman and Director of The John Theurer Cancer Center.

·         Opening remarks and introductions.

8:40 - 9:40 AM Elias Campo,M.D., Ph.D University of Barcelona, Spain

·         Understanding the Biology and Prognostic Markers of MCL. Stratification of patients by genetic and biological markers. Update on the identification of new targets for therapy and the potentials of tailoring treatments to individual patient needs.

9:40 - 10:40 AM Jorge E. Romaguera, M.D.M.D., Anderson Cancer Center, Houston, TX

·         R-Hyper-CVAD, conventional and emerging frontline chemotherapy regimens for both younger/fit patients and for older, or transplant ineligible, patients. The emerging role of consolidation and maintenance therapies in management of MCL

10:40—10:55 AM

·         Coffee Break

10:55 - 11:55 AM Christian Geisler. M.D., Ph.D. Rigshospitalet, Copenhagen, Denmark

·         Impact of high dose frontline therapy with autologous stem cell transplant on outcome: the Nor-dic Group’s experience. Molecular remission and the potential benefits of monitoring minimal residual disease after complete molecular

11:55 - 12:40 PM

·         Lunch

12:40 – 1:40 PM Scott Rowley, M.D. John Theurer Cancer Center, Hackensack, NJ

·         Options for Relapse or Refractory MCL. Are autologous stem cell transplants better in a frontline setting? Progress & the role of the mini-allo, or reduced intensity,non-myeloablative allogeneic transplant.

1:40 - 2:40 PM Andre Goy, M.D, M.S. John Theurer Cancer Hackensack, NJ

·         Toward Cure and Less Toxic Treatment: Emerging and Novel Therapies for MCL. Exciting new directions and the most promising targeted treatments – single and combination therapies – cur-rently in development and clinical trials.

2:40 - 3:10 PM David Miller, 9-year MCL Survivor, Aspen, CO

·         Perspectives from an Expert Patient and Long-Term Survivor. Optimizing survival and health through healthy lifestyle and cutting edge nutrition. What is the role of the informed patient from diagnosis through long-term survivorship? The best ways to become an informed patient. Opti-mizing communication with your oncologist and becoming a valuable member of your healthcare team. Is a clinical trial right for me?

3:10 - 3:30 PM

·         Farewell remarks

If you are interested in attending or learning more about this event please see below:

Registration: 
 For more information or to register please email Ms. Ewelina Jakubowska at:

ejakubowska@humed.com 
or call at 201-996-4469

You can also register online at: 

http://www.jtcancercenter.org/site/event-view-pagemantle_cell_lymphoma_symposium

  

The John Theurer Cancer Center is located at: 92 Second Street, Hackensack NJ 07601

 

I plan to post my next update after I get the results from my next scans which are scheduled for December 12^th with me getting the results on December 16^th. Of course if I have any news to report I will enter an update sooner. 

 

More to come…

http://mantlecell.blogspot.com/

Happy 3 Year Anniversary

7/17/11 – Today marks my 3 year anniversary of being diagnosed with Mantle Cell Lymphoma.  If you were to see me today, other that the small scar where my port used to be, there is no evidence that I was ever sick.  I continue to be in full remission and I feel great and I am back to living a very full life. Although there is not are cure for MCL that I know of, I fully expect to remain in remission for the very long time and hopefully the rest of my life.

With today being a Sunday, I was able to spend my morning in Church, playing my guitar as a music minister. It was certainly a joy to have my wife and two daughters in the congregation. In speaking with my good friend and fellow music minister today, he said it seems like it should be much longer than 3 years. There is no doubt that much has happened in my life since July 17^th, 2008. And it does truly feel like it was a lifetime ago.

If you are reading this blog as someone recently diagnosed with MCL, you should gain great relief in hearing that you can and will beat this. For one thing, medical science has come a long way.  Another thing is that by you keeping a positive attitude, no matter what little setbacks you may (or may not) run into, you will be greatly helping your doctors, caregivers and caretakers succeed in making you better. The day will come that you too will be marking the anniversary of your diagnoses with joy in your heart.

And know that God says: “I am always with you… Be not afraid.”

May the peace of Christ be with you always.

I plan to post my next update after I get the results from my next scans which are scheduled for December 12^th with me getting the results on December 16^th. Of course if I have any news to report I will enter an update sooner.

More to come…

Let’s Celebrate

6/13/11 – I went for my scans today. As I was being registered I was asked if I had ever done this before. As I thought about it I have completely lost count of just how many times I have had scans. I guess the great news is that I appear to others as someone who has never done it before.

6/22/11 – My daughter Alli graduates High School today. It is great to be here.

6/24/11 – Today I meet with Dr. Goy to get my results from my scans. We had to wait a little longer because Dr. had an emergency at the Hospital. After hearing this I said to the nurse, “I have been on the other side of this when I needed Dr. Goy to drop everything and tend to me, trust me, I have no issue with waiting”. When we did meet with Dr. Goy he asked me how I felt. I quickly replied “I feel GREAT!!!” Dr Goy then said that everything is perfect. I had no issues at all. He was so pleased with my results that he graduated me to scans every 6 months. WOW, isn’t this great!!!!! With all the graduations going on in my family it is time to CELEBRATE! I truly feel that after all my past challenges that I am now stronger than ever.

"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:9-10

My next update will be after I get the results from my next scans which are scheduled for December 12^th with me getting the results on December 16^th.

More to come...

http://mantlecell.blogspot.com/