Thursday, October 13, 2016

Another Positive Result of MDS

10/13/16 – Let me start by saying I am so thankful for the uneventful summer I had. It was a summer full of fun with family and friends. Life is meant to be lived and I tried my best to make the most of it. Now we are in fall... my favorite time of the year... there are such beautiful colors, great weather, apple and pumpkin picking… which become apple crisp, apple pies, pumpkin bread and pumpkin pie… truly some of the greatest seasonal treats. It’s just an awesome time of the year.

Also with this fall season it was time for my periodic bone marrow biopsy to see where I stand with MDS (Myelodysplastic syndrome) which fist showed up in March and again in April.

Well once again MDS has shown as positive. It does seem with each test result the MDS impacts more cells. The good news is that my MDS condition is considered as low risk. Also my blood counts continue to be pretty good. Saying this, based on my heath history, it may be best to take an aggressive approach and treat it versus following a wait and watch approach. Treatment options being considered for me are:

1.       Having another DLI.
2.      Chemotherapy with a drug called Vidaza
3.      Continue with a wait and watch approach

As a follow up we are going to do another check of my blood counts on Tuesday, November 1st to see if there are any changes. In the meantime, my awesome transplant team will be looking into studies, literature, and speak with The John Theurer Cancer Center leukemia team to see what the best course of action is.

I have plenty of confidence and trust in the medical team… and my faith in Christ is a huge comfort… I just know I will be OK.

I just need to keep busy, keep moving and to BE POSITIVE!!!

Here is a link to a great song by tobyMAC that brings home this point. The song is called “Move (Keep Walking)”. Enjoy!!!

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4

More to come…

Sunday, August 21, 2016

A Time to Thrive - What a Difference a Year Makes

8/21/16 – I had an appointment at the cancer center this past Friday and I am thrilled to say that all my blood counts were… as crazy as it might sound…. NORMAL. Just a year ago I was being put through the mill. WOW!!! What a difference a year makes. 

If you think about it, at this point it makes very little sense to waste time thinking about the past. My focus now needs to be on the future… which is looking bright.

Here is some food for thought. Although people who had cancer and are now blessed with the gift of good health are often referred to as “survivors”, is that what we want to do… survive???
Heck No!!!!  
In my opinion God wants us to do so much more than just survive…
He wants us to THRIVE!!!!

That is what I plan to do.  

Here is a link to a great song by Casting Crowns called “Thrive” that brings home this point.


My next follow up appointment is on 9/19 with Dr. Goy and on 9/28 I will have a bone marrow biopsy to revisit where I stand with MDS.

How blessed is the man who does not walk in the counsel of the wicked,
Nor stand in the path of sinners,
Nor sit in the seat of scoffers!
But his delight is in the law of the Lord,
And in His law he meditates day and night.
He will be like a tree firmly planted by streams of water,
Which yields its fruit in its season
And its leaf does not wither;
And in whatever he does, he prospers.
Psalm 1:1-3

Sunday, July 17, 2016

Celebrating the Gift of a Happy 8th Anniversary

7/17/16 – Am I crazy to want to celebrate the 8th Anniversary of the day I was diagnosed with cancer? One would think that I would want erase the memory of such an awful day from my memory. But I would tell you this is absolutely a day to celebrate. I feel the need to celebrate the battle, celebrate that fight, celebrate that I have endured, celebrate that I survived, and most of all celebrate that I am still here.

If my Adventures with mantle cell lymphoma have taught me anything it is that every day is a gift. A gift that we should never take for granted. With each day I truly feel that we need to make the most of it, focus our time on what matters and never sweat the small stuff… and we should never carry grudges… we should always have forgiveness in our hearts… Life is too short... Relationships with our loves ones, family and friend are just so valuable. We should always show our love and appreciation for them and never let small differences bring harm to our relationships.
We hear that we need to work hard to achieve the American dream. I would argue that what we really need to do is to LOVE HARD… and keep peace, love and happiness in our lives.  

On Saturday, July 16th my beautiful bride of 31 years and myself went into to New York City for lunch at Carmines and to see a Broadway play in celebration of my 8th Anniversary. We had an awesome day. We saw “The School of Rock”…. What an entertaining and enjoyable play. This was especially a happy celebration being the past year was a pretty tough one with chemo, unplanned hospital visits, issues with blood counts, ITP, and more… If you think about it was less than a year ago that my heart stopped, I was a code blue, I was knocking on heaven’s door… BUT I am here now… feeling great, feeling the best I have in a while… I am alive and well… so you bet I am going to celebrate.

If you are reading this blog as someone who is a fight with cancer (or knows someone in a fight), please know that in the past 8 years I have had many days where I have felt fantastic… and I certainly plan to have many, many more. This is a fight that is well worth it and although there may be times when it is hard… this does pass and there will be great times ahead. Keep the faith, keep the hope and BE POSITIVE.

Here are YouTube links to a couple of great songs of encouragement and inspiration by Switchfoot.

“Dark Horses” – a song about never giving up

“Live It Well” – a song about focusing on what matter in life

This is the day that the LORD has made; let us rejoice and be glad in it.
Psalm 118:24,

Wednesday, June 22, 2016

School's Out

6/22/16 – WOW… it’s like I am a school kid starting summer break. I met with Dr. Goy today with the expectation that I would be starting PD-1 (Opdivo) today. We started with reviewing the results of my PET scan (yes, I had a PET on 6/20 in preparation for beginning PD-1). Dr. Goy happily reported that all was clear. He then said “you have been through a lot and now you are doing so well. I think you deserve a break.” He then proceeded to tell me that he wasn’t going to start me on PD-1 today. He wrote a script for another PET scan in 6 months… at that point we will see how I am doing.

In truth,  I am a little relieved. If my scans are clear and I am doing well, why introduce a new drug when we are unsure on how I would respond to it. I would rather take a break and enjoy my good health. So, I am really happy with this decision.

My next PET scan is scheduled for December 19th. I also have a bone marrow biopsy schedule for September. This is to follow up on the MDS… but I am not even thinking about that at this point. I have an entire summer in front of me to enjoy.

In celebration of my good news and time off, here is a link to the Rock N Roll classic “School's Out” by Alice Cooper. Enjoy!!!

Return to your rest, my soul, for the Lord has been good to you.
Psalm 116:7

More to come…

Tuesday, May 31, 2016

All Quiet on the Health Front

5/31/16 – It’s been about a month since my last post and not much has changed for me. My blood counts continue to be great… one may even say that they are normal. As far as it goes with my most recent challenges, we will revisit my MDS in September when I will have another bone marrow biopsy. Also, I will be scanned in August to hopefully see that I am still in remission with MCL.

In the spirit of “life goes on”… today I received a number of vaccinations - Diphtheria, Tetanus, and Pertussis as part of the DTap vaccine. In addition I received Hib (Haemophilus influenza type b) Hepatitis B, Polio, and Pneumococcal Disease. Vaccination wise I am now on par with a 1 ½ year old.

On the exciting side of things, I have an appointment with Dr. Goy on June 9th to discuss starting my PD-1 (Opdivo) treatments. For someone with lymphoma this is really pretty cutting edge stuff. The hope that comes with this is longevity… and I am all for it.

Other than that all has been quiet on the health front… and I must confess that living a quiet, boring, normal life is a very good thing.  

And we know that for those who love God all things work together for good, for those who are called according to his purpose.
Romans 8:28

More to come…

Thursday, April 28, 2016

Crazy Times

4/28/16 – I met with Dr. Rowley today and learned a lot more about my situation with MDS. It all points to chromosome 20. Basically the bone marrow biopsies are showing a 20q abnormality. The crazy thing is that I am feeling better than I have in a very long time.

With that said, as long as my counts stay good we will take a wait and see approach and hold off doing anything for about 6 months. At that point I will have another bone marrow biopsy. Of course if my counts drop before then (which can be a sign that the MDS is progressing) I will have a bone marrow biopsy sooner. If this does progress it seems that the best treatment would be for me to have another stem cell transplant… but let’s not get too far ahead of ourselves. For all I know I could have a clean bone marrow biopsy in 6 months.

In discussing why this 20q abnormality is happening to me one thing that has been speculated is that it could be donor derived. This doesn’t mean my donor had MDS. It means that if my donor had chemo therapy that there would be a good possibility that he would have developed MDS afterwards. How crazy is that???

Another thing that has come up over the last two weeks is that I have an itchy rash on my neck, arms, chest and back. It is not a bad enough to be considered GVHD but it is bad enough to be a reason to delay treating me with PD-1 (Opdivo). Apparently PD-1 and GVHD do not play nice together. If there is the slightest chance that my rash is GVHD then it is better to play it safe than sorry.

So… I think my word of the day is “Crazy”. I guess it’s fair to say that things are never boring with me.

I have a follow up with Dr. Rowley in two weeks on Friday, May 13th. Friday the 13th??? 
I’m sure nothing crazy could happen…. Right?

Check out this song by Jars of Clay called “Crazy Times”

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:7

More to come…

Wednesday, April 20, 2016

Bone Marrow Biopsy Results Are In

4/20/16 – Over that last few weeks my counts have been awesome. My platelets have gone from 97 to 123 to 126 to 137. I couldn’t have asked for more. With everything trending towards good news the thinking of those a heck of a lot smarter than me was that I should have nothing to worry about with my latest bone marrow biopsy (taken on April 8th). 

Well the one wild card is that this is me and when have I ever followed what was supposed to happen?

I heard from Dr. Rowley today via a phone call and I was told that the test results again showed positive for MDS (Myelodysplastic syndrome). This certainly was not the news I wanted to hear. I did not get many details. I’m sure we will get into this when we meet face to face at my next check up on Thursday, April 28th. Dr. Rowley did say that with my counts being so good that there was no reason to rush into anything and if my counts stayed good we could hold off doing anything for about 3 to 6 months… and at that time I will have another bone marrow biopsy to see where things stand.

So now I just need to keep positive, have faith and keep the hope.

Here is a YouTube link to a great song by Rend Collective called “Joy of the Lord”. It is a wonderful song for keeping my focus on what matters.

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.
1 Thessalonians 5:16-18

More to come…