Friday, May 31, 2013

Donor Search - Strike 1

5/31/13 – I have an update to share with you regarding my Bone Marrow/Stem Cell donor search. I have two brothers and they were both tested to see if they were matches with me. Unfortunately neither one is a full match. One on my brothers was a half match and the other did not match at all.  My transplant doctors really want a full match so the next step will be for us to check the donor registry. Of course the good news is that the Ibrutinib is working and that I feel great. Based on this, I do not have a sense of urgency to rush and get the transplant. Maybe my doctors would not agree with this but I am clearly not in a life or death situation.

I think I would be remiss if I didn't say something about all those people who have volunteered to be bone marrow donors. It is an amazingly generous thing to do to help someone who is in need. Please allow me to say THANK YOU to all the members of the Bone Marrow Registry.

Here is a link to an awesome song about generosity. It’s call ‘The Generous Mr. Lovewell” by MercyMe. Enjoy!  http://www.youtube.com/watch?v=hCgLiZY5FQ8

Do not neglect to do good and to share what you have, for such sacrifices are pleasing to God.
Hebrews 13:16

Let each of you look not only to his own interests, but also to the interests of others.
Philippians 2:4

Give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.”
Luke 6:38

But if anyone has the world's goods and sees his brother in need, yet closes his heart against him, how does God's love abide in him
1 John 3:17

More to come…

Tuesday, May 21, 2013

It Sure Looks Like the Ibrutinib is Working

5/21/13 – I met with Dr. Goy today to get the results of my first scans since beginning my Mantle Cell Lymphoma treatments with Ibrutinib 63 days ago. My MCL has reduced by 88%. All I can say is WOW!!!

I said to Dr. Goy ‘It sure looks like the Ibrutinib is working.” He responded... with a chuckle in his voice “it also helps to have good doctors.”  And I couldn't agree more. It also helps to have such a great support system of family and friends who are constantly praying for me. And, of course, with God, all things are possible.

Today I begin my 4th cycle and sure, I still have a ways to go before I stomp this Mantle Cell Lymphoma out of my life…. but let’s forget about all that for now and let’s celebrate 88%.

To help celebrate here is a link the Delirious’ wonderful “Happy Song” performed live. Enjoy!:

“And whatever you ask in prayer, you will receive, if you have faith.”
Matthew 21:22

More to come…

Sunday, May 19, 2013

Did you just call me old?

5/19/13 – I must say, these 21 day cycles just fly by. Tomorrow is the last day of my 3rd cycle. That will mark 63 days that I have been on Ibrutinib. Over this next week I will get the opportunity to see how I am responding to the Ibrutinib treatments. Tomorrow, May 20th, I get first set of scans since I started treatments. On Tuesday, May 21st I have an appointment with Dr. Goy where I will get my scan results and I will begin cycle 4.

As far as news on the transplant, there is no news. My brothers and I are still waiting to hear back on if we are matches.

With these last few weeks I have noticed some things that may be symptoms. For one thing it seems that my stomach can get upset with even the blandest of foods. Whether it is diarrhea or nausea, I experience discomfort almost every day. Another thing that is happening more often is I am getting cramps in my legs, feet and hands. I have been getting fairly severe “Charlie horses” in the calves of each leg. A few have been so bad that my poor wife had to peel me off the ceiling. The last symptom like item I will point out is being tired. If I sit still for any period of time I will definitely fall asleep. I haven’t been able to make it through an entire TV show in weeks. Sometimes perspective comes from the most surprising places. I had an eye appointment this week being I have had some trouble reading up close. I have been a customer of my optometrist for about 25 years and we have become good friends over the years. He had an interesting point of view on what I am going through. He said: “so… you are having trouble seeing up close, your stomach gets upset easy from eating, you get cramps in your legs and you fall asleep in front of the TV. Hmmmm…. I think it is just that you are getting older and you are experiencing the same stuff that other people who are your age go through.”  I wonder…  he is probably correct. WOW having MCL is one thing but now I feel OLD.

Here is a link to an all-time great song about getting old by my all- time favorite performer. Mr. Neil Young singing “Old Man” Enjoy! : https://www.youtube.com/watch?v=221mohEolWc

Gray hair is a crown of glory; it is gained in a righteous life
Proverbs 16:31

More to come…