Monday, August 31, 2015

DLI Follow-up Appointment

8/31/15 – I met with Dr. Scott Rowley today to review where I am with the Stem Cell Transplant, the DLI from August 3rd and the recent challenges I have run into. He was very thorough and answered a lot of questions.

For one thing he is thinking that my DLI was not necessarily the driver for the GVHD rash that appeared. Typically a DLI takes longer to bring on GVHD. It is very possible that the rash (and other GVHD symptoms) was coincidental. The DLI will likely start showing its signs in a week or two. In addition there is a plan for me to have a second DLI at the end of September once I am weaned off of the prednisone.

While Dr. Rowley was meeting with me he had a phone conversation with one of my cardiac doctors. The feeling of the cardiac team is that my syncope/passing out/heart issues are not due to a bad heart. They seem to be related to certain events (para influenza, GVHD, etc…). There is no doubt that I have been hit a number of new medications over the past two weeks. There is certainly a level of trial and error that comes into play being everyone seems to have a unique response.  Dr. Rowley did make it clear that GVHD is like playing with fire… and I think I can have the burns to show for it.

As far as my blood counts go, my platelets were on the low side. I have an appointment on Thursday, September 3rd to check them again and possibly receive a platelet infusion. All my other blood counts were in pretty good shape.

Since my release from the hospital last week we have been constantly checking my heart rate and blood pressure. For the most part everything has been looking good. The one thing that is a bit of a concern is my ongoing lightheadedness. Sure, it could have to do with my fall from passing out and hitting my head. It could also be the mix of my medications. Maybe it is just me recovering from two unplanned weeks in the hospital.

I have a follow up appointment with Dr. Rowley on Tuesday, September 8th.

So, yeah… with my chemo treatments complete you would think that everything would start moving back to normal, but with DLI now the primary means to fight my MCL things seem to be getting more complicated. There is a high level of enthusiasm with this approach from my doctors. This makes me and my family very hopeful.

Surely there is a future, and your hope will not be cut off.
Proverbs 23:18

More to come…


Friday, August 28, 2015

So what exactly is going on with me?

8/28/15 – It has certainly been a couple of interesting weeks for me... Fevers, GVHD sighting, low heart rate, etc…

My new cardiology doctors are looking to monitor my heart. I guess with a history of passing out it may be smart to see if these episodes are related in someway. 

Also, it would be great if all my doctors were on the same page but it may take some time to get there. There are just still so many questions:
Are all the mix of medications causing issues?
Is the GVHD causing the wows?
How about my MCL being fought by my immune system (brought on my GVHD)?
Do I need more research on my new heart ailments?
Do I need a pace maker to give my heart an extra boost when it is needed?

There is no doubt that I have more questions than answers.

It was great to get released from the hospital yesterday. I will be back at the cancer center on Monday, August 31st  to meet with the transplant team to follow-up on my DLI that I received on August 3rd. While I am at cancer center it is likely I will also meet with oncology to follow-up on my recent hospital stay.

But to you who fear My Name The Sun of Righteousness shall arise With healing in His wings; And you shall go out And grow fat like stall-fed calves
Malachi 4:2

More to come…


Wednesday, August 26, 2015

Quick Health Update - Back in the hospital

8/26/15 – As a follow-up to my hospital stay last week… I had an appointment at the Cancer Center on Monday, August 24th. I am sure it wouldn't surprise you that I would encounter a challenge or two. With this visit my heart rate ran a low 30. At one point I actually had an episode where I passed out in the hospital bathroom. I had a team of doctors work on me, perform CPR, pound on my chest and get me back to consciousness. It would seem that it was most likely due to a too high dosage of the steroids I am on called prednisone that is for managing GVHD. It does appear that everything is starting to stabilize. I am hoping that I will be discharged over the next few days.

Lord my God, I called to you for help, and you healed me.
Psalm 30:2

More to come…


Thursday, August 20, 2015

Crossing the line into GVHD (Graft vs Host Disease)

8/20/15 – Looking at the events of the past week for me it shows just how crazy a ride this adventure could be. With my last post I had mentioned that I have managed to avoid any hospital stays… well that has changed.
On Wednesday, August 12th I was in the ER with fevers in the 102 range. I was given the normal work up, where they took blood cultures etc… I was given an antibiotic and after a few hours my temp was gone, my blood counts were normal and initial blood cultures were clear… so I was sent home.

I had a follow up appointment at the Cancer Center on the following day; I was given a CT scan and was told that they show GREAT improvement of my MCL. But there was nothing that caused concern of the fevers.

On the morning of Friday, August 14th I was again running a fever and headed over to the Cancer Center. We reviewed all my tests. Being there were no signs of infection with my blood cultures,  it was decided that this was most likely something viral. If fevers did return I should take Tylenol. Any Virus will simply run its course.

Well... it is just never that easy.

On Saturday, August 15th at around 10PM I had a fever of 104.3. Knowing full well that this is more than viral… I ended up in the ER again. The ER drew blood, put me on antibiotics, and gave me Tylenol. I was eventually admitted into the hospital by the morning of Sunday, August 16th.

While in the hospital my fevers were treated with antibiotics, Tylenol and cooling techniques (chilling blanket and being packed in ice) but it seems that each day I still hit a fever of over 102.5.  

If you think about it… the Tylenol and cooling techniques simply mask what is really going on. In my case I was being given antibiotics that we not working… could it be that I was being treated for the wrong thing???

Each day I was visited by my doctors from Oncology, Infectious Disease and Transplant. I would get my normal checkup along with some very similar questions:
Do you have a rash?
Do you have diarrhea?
Is your mouth dry?
Are you experiencing any indigestion?

It was as if someone from above wanted to give assistance in solving this mystery, on Wednesday, August 19th all of a sudden I had a rash on my arms and legs, I had dry mouth, I had diarrhea and I was starting to feel some indigestion.

It was now clear to my doctors that I had Graft vs Host Disease. By adding steroids to my IV regiment my fevers were soon gone. If all goes well I may be released as soon as tomorrow. That would make me very happy. I am ready to go home.

I would be completely negligent if I didn't say THANK YOU to my wife who has been by my side every second of this most recent episode. I am a very lucky man to have someone who loves me so much. I truly love my wife of almost 31 years.
.
Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.
Matthew 7:7

More to come…

Saturday, August 8, 2015

4th Cycle with a side of DLI

8/8/15 – On Monday, July 27th I started my 4th cycle. I had my additional treatments on the 28th and the 29th. According the Dr. Goy this should be my last cycle of RBAC. I am very hopeful that I will be able to avoid any hospital time. As we approached the later part of the week I was feel tired and weak.

On Monday, August 3rd I had my first ever DLI (Donor lymphocyte infusion). The goal with this will be to booster my new immune system. We are looking to get some signs of GVHD (graft versus host disease). It could take as much as 7 to 9 weeks before we will see any impacts of the DLI. One impact we did see right away is that it made me smell bad. I smelled like cream corn for a couple of days. By the way, did I ever tell you how much I hate cream corn?

On Wednesday, August 5th I had a follow up to check my counts from the prior week’s chemo. As with my first three cycles, all my blood counts had crashed. I was given platelets because there were at 12. My WBC counts were 0.6.

On Friday, August 7th, I again was at the cancer center for another follow up. Again my counts were very low. My WBC count was 0.9 and my platelets were at 18.  I was given both blood and platelets. The plan is for me to have another follow up on Monday, August 10th.

So… the good news is that I have managed to stay out of the hospital. I will say that I have had fevers over the last few days that were at or above the 100.5 mark. What I have been doing… which is probably not the right thing, is to give it a half hour and check it again. Each time my temperature had fallen back below the 100.5. YES, I know I am told that I need to call right away once I hit 100.5 but I much prefer to deal with the cancer center during the day then the ER at night. This probably falls under the “do as I say, not as I do” category. Truly if you run a fever of 100.5 while in treatment you should call into the cancer center (or on call doctor) and follow whatever instructions are given to you.

The bad news… I do not believe there is any. I am very happy to be living as normal a life as I can.

What does Monday have in store for me?... Only God knows… and I turn all my cares, worries and fears over to him.

Here is a great new song that wonderfully drives home this point. It is called “Cast My Cares” by Finding Favour”. Here is the link. Enjoy!

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love.
1 John 4:18

More to come…



Sunday, July 26, 2015

I had a BLAST at my Daughter's Wedding

7/26/15 – I am thrilled to report that I attended my daughter’s wedding and was there with energy and enthusiasm. I walked her down the aisle, sang a song at her wedding ceremony, danced with my daughter during the traditional father-daughter dance, I gave a toast to the newlyweds, gave a blessing before the meal and had a blast of a time. I am so thankful that my doctors and staff did all they could do to ensure I could share this wonderful day with my daughter. I am so happy for my daughter Jill and her new husband Marc. May they have many years for health, happiness and prosperity.

So tomorrow I start my 4th treatment cycle. I guess all good things must come to an end... but for now I am living on cloud 9.

Below is a glimpse of my daughter’s wedding ceremony and reception. 




Also I am so happy that I was able to give them the gift of song. The following YouTube link includes a video of me singing “Wedding Song (There is Love)”.  https://www.youtube.com/watch?v=Yj3MqAAhzWY

If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing.
1 Corinthians 13:1-3

More to come…

Friday, July 17, 2015

Happy 7 Year Anniversary

7/17/15 – Today marks 7 years since I was diagnosed with Mantle Cell Lymphoma. As strange as it may seem, this is a day when I feel the need to celebrate.

When I think back to July 17, 2008, the day I was diagnosed… as I sat in a waiting room, waiting to speak to an oncologist at Morristown Hospital, I am using my Blackberry to Google Mantle Cell Lymphoma. I read many grim post and articles. Everything on the internet was telling me that my time was short, I had maybe 2 to 3 years at best and that Mantle Cell Lymphoma was truly a death sentence… At the same time I am hiding what I am doing and reading from my wife. I put on a brave face, I make it known that this is no big deal, that I will be fine, and that we have nothing to worry about… Within my personal thoughts I was trying to process just what was happening to me.

If you take that moment back in 2008… and then see that 7 years have passed, why would you not want to celebrate? Although I have had my ups and downs over the 7 years, I have had many awesome times. Times and events I wouldn’t trade for anything in the world. And in a week from today I will be at my daughter Jill’s wedding. This is certainly not something that seemed feasible as I sat in a Morristown waiting room back in 2008.

Sure I still have some work ahead me to get back to full health, but I will fight, I will get healthy and I will be here to celebrate many more July 17th Anniversaries.

Also, there are so many people to thank for all the support I have gotten over the years. To all, and you know who you are, please accept my sincere THANKS for all you do for me and my family. And for my family, you are the reason I fight on. I love you so much.

To my fellow cancer fighters… Cancer research and treatment has incredible advancements every day. We can never give up because we just never know what great advancement each new day brings.

Stay STRONG, Be POSITIVE and may the Peace of Christ be with you always.

Here is a great song about being strong. It’s called: “You Gotta Be” by Des'ree
Enjoy!

The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. The Lord is the strength of his people; he is the saving refuge of his anointed.
Psalm 28:7-8

More to come…