Sunday, May 17, 2015

A bump in the road turns into The Best Surprise Ever

5/17/15 - On Tuesday, May 12th, my wife Sue and I were relaxing watching TV after a day at the Cancer Center. I have mentioned in the past that I have been dealing with a bad cough, well Tuesday night was no different… or so I thought. During one coughing fit I actually passed out. All I can remember was Sue standing over me saying “Rich, are you alright, Rich, are you alright?” I slowly regained consciousness but was left with a feeling of being exhausted.

On the following evening my wife and I were again relaxing watching TV when I felt a little warm. We took my temperature and it was 100.6. When my temperature hits 100.5 is when I typically call into the cancer center to see what they would like to do. I suggested to my wife that we wait a few minutes and take my temperature again. In the time we were waiting I had another coughing fit and I passed out again. Regaining consciousness was similar to what happened the night before. We took my temperature again and it was 100.4. We did it one more time and it was 98.6. Even though my temp was OK we decided call the Hospital. This ended up being a good idea. The on call doctor wanted to see me ASAP being he was very concerned with me passing out. (to be continued)

This was the beginning of a few crazy days where I learned that I have a few aliments, that when they are brought together can create something called “Cough Syncope”. This is a well-known entity which results in loss of consciousness during episodes of cough due to the loss of air/blood flow to the brain.

The aliments that I was found to have are:
Parainfluenza (not to be confused with the Flu) - Typically, it is one of those things that does not impact most people. In my case, being I have a suppressed immune system due to my recent chemo and SCT, it can be a big issue for me. Parainfluenza is the leading cause of croup in children. Croup is a swelling near the vocal chords and in other parts of the upper respiratory system. I guess my immature immune system is making its presence known
Pneumonia – A CT scan showed that I have signs of pneumonia
Mantle Cell Lymphoma – Yes, my MCL is in my chest and abdomen areas with some of the tumors resting on top and creating pressure to arteries and vessels of my respiratory system.
When these are all present it can bring on Cough Syncope

(Continued) We arrived at the hospital emergency room around 11:30PM on the evening of May 12th. I was put through a series of tests and saw a couple of doctors. While in the ER I had another coughing fit and passed out again. Being I was hooked up to all kinds on monitors there was a clear drop in my blood pressure with this coughing/passing out episode. This was enough information for me to be admitted.

When I got to my room, it was now Wednesday morning. It didn't take long for me to experience another coughing/passing out episode. My roommate called the nurse while Sue shook me back into consciousness. Over this time I had another 2 episodes. The hospital decided to assign me a 24/7 sitter, someone who would constantly watch me. As my episodes continued the medical team evaluating me grew in size. It included oncology, pulmonary, infectious disease, neurology and cardiology.  

As Thursday evening approached, I had another 4 episodes followed by another few more episodes during the early hours of Friday with the last episode occurring 5AM.  From that point on it seemed that the medications started to do their jobs.

With all this going on, we were planning to have a Bridal Shower at our home for my daughter Jill on this Saturday, May 16th. I really didn’t want my situation to impact this fun event.

Friday passed without any incidence. The doctors stopped by and said he wanted to continue to observe me for another day or so. The good news was that it seems that the episodes have stopped. I did still have a bad cough but I was not passing out.

My wife stayed with me a few hours while my younger daughter Alli did all she could do the set up for her sister’s Bridal Shower. My wife left to go home around 3PM. This made me feel good, knowing that my Daughter Jill’s Bridal Shower was going to happen. Sure I wouldn't be there but Showers are for women anyway.

After being monitored all day on Friday and Saturday morning arrived, the team of doctors working on my case decided that I could be released. The feeling was that the medications were working. Also, once the Parainfluenza and Pneumonia to run their courses I could begin to be pulled off the medications. Lastly, as I continue to receive my chemotherapy treatments the tumors in my chest will reduce in size (and hopefully go away). I have a follow up appointment at the Cancer Center on Tuesday, May 19th.

I was excited to be able to go home. My good friend Larry offered to come and pick me up. I was able to make it home in time to get showered and shaved and presentable in time for my daughter Jill’s Bridal Shower. The day went on to be a great day. Everyone had a wonderful time. As the day wound down my daughter Jill told me that “It was the best surprise ever that you were there”.

The heart of man plans his way, but the Lord establishes his steps.
Proverbs 16:9

More to come…

http://mantlecell.blogspot.com/

Tuesday, May 12, 2015

Counts Rebound

5/12/15 – There is a reason why chemo treatments are referred to as cycles…. It is because you literally experience a cycle. First you get the chemo… then your counts drop… then you counts rebound… then you are ready to begin your next chemo cycle.  
Today at my checkup my counts completely rebounded… as everyone expected they would.
•          My platelet count went from 6 to 60.
•          My white blood cell count went from 0.6 to 8.3.
•          My neutrophil count went from 0 to 4.9.
This is certainly great progress for me. Now I feel that I am ready for my 2nd cycle which is scheduled to start on Tuesday, May 26th I start my 2nd cycle.

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope
Romans 5:3-4

More to come…


http://mantlecell.blogspot.com/

Thursday, May 7, 2015

Follow-up Appointment for 1st Treatment

5/7/15 – Today I had my first follow-up checkup since my treatments last week. I have been feeling a little tired and I have had a nagging cough. While driving to the appointment I made a prediction to my wife that my platelets would be a little low. Well, sure enough my counts were pretty low across the board.
  • My platelet count was 6. The normal range for platelets is between 130 and 400
  • My white blood cell count was 0.6. The normal range for white blood cell is between 4.0 and 10.8
  • My neutrophil count was 0. The normal range for neutrophil is between 2.5 and 7.0

Based on these counts and my nagging cough Dr. Goy had me get a chest CT and receive an infusion of platelets. Dr, Goy put a rush on the CT results and he was able to find that the scans showed nothing that he was concerned with. He did ask me to return on Tuesday, May 12th to recheck my counts and get another infusion if necessary.

On a happy note, my trip to my Goddaughter’s wedding went well with no issues. I was so glad I could be there for her and her family.

So this is just the beginning of what will be a long road. Having low counts is just part of the process. It is certainly not something that should get me down, discourage me or get overly worried about. Within the next couple of weeks all will be normal again and I will be getting ready for my second cycle. I have always said that to survive the long haul it is best to not get too high, or to get to low. At the same time it is important to keep positive and never give up. It is my attitude, healthy mind, inner peace and faith in God that will get me to a successful outcome.

The LORD gives strength to his people; the LORD blesses his people with peace.
Psalm 29:11

More to come…


http://mantlecell.blogspot.com/

Wednesday, April 29, 2015

One Treatment Cycle Down – So far so good

4/29/15 – I have made it through my first treatments and so far so good. I will say that I feel a little tired but for the most part all is going as well as it could be. When I hit about 10 days after treatments it is predicted that my white blood cell count (WBC) will drop a bit. That seems to be what I recall happening in the past. In going through cancer treatments it is typically the “unknown” that makes things a little scary. With me being a “veteran” of chemotherapy since 2008, it is the “known” that makes things a little scary. Certainly, my history of infections is the elephant in the room (a problem that everyone knows is there but no one wants to acknowledge). 

My next set of appointments are as follows:
  • Tomorrow I need to return for an injection of Neulasta, This will help reduce the risk of infection by boosting my white blood cell count to strengthen my immune system. For some reason my neutrophil has been low. It was at 1.2. For it to be normal it must fall between 2.5 and 7.0.
  • May 7th I have a follow up with Dr. Goy
  • May 26th through May 28th I am scheduled for my 2nd treatment cycle

 I can’t say it enough how important it is for me to stay positive and to be driven by Faith, Hope, Love and Prayer. I truly believe that my good attitude and approach to my treatments is something that has been contagious with my chemotherapy comrades who share the same infusion room with me. Socializing, sharing our stories and providing encouragement to each other is extremely powerful to the healing process for all of us.

All and all this was a great way to start my treatment of MCL. I am looking for the momentum of this positive week to carry through to a successful outcome.

Here is a YouTube link to a great song that has been helping me greatly. I listen to it, play it on my guitar and I have even sung it in church. Give it a listen, I hope you get the same inspiration that I get from it. It is called “One thing Remains”. Enjoy!

A joyful heart is good medicine, but a crushed spirit dries up the bones.
Proverbs 17:22

More to come…

http://mantlecell.blogspot.com/

Monday, April 27, 2015

First Day of Treatments… Take 3

4/27/15 – I started with my first treatment of my first cycle today and all went well. It was a long day. My wife and I left the house at 8:30AM and arrived home about 8:00PM. I received rituximab followed by cytarabine, two medicines I have received in the past.

In going through treatments it is typically the “unknown” that makes things a little scary. With me being a veteran of chemotherapy since 2008, it is the “known” that makes things a little scary. Certainly, my history of infections is the elephant in the room (a problem that everyone knows is there but no one wants to acknowledge). I guess no one wants to jinx me... I guess that is a good thing. 

The rest of my week has two more days of treatments on Tuesday and Wednesday. On Thursday I need to return for an injection of Neulasta, This will help reduce the risk of infection by boosting my white blood cell count to strengthen my immune system. For some reason my neutrophil was low today. It was at 1.2. For it to be normal it must fall between 2.5 and 7.0.

All and all this was a good day and a great way to start my treatment of MCL (for the 3rd time). I am looking for the momentum of this positive day carry through the rest of the week.

A joyful heart is good medicine, but a crushed spirit dries up the bones.
Proverbs 17:22

More to come…


http://mantlecell.blogspot.com/

Wednesday, April 15, 2015

It’s Official; My Mantle Cell Lymphoma is Back… Again

4/15/15 - I met with Dr. Goy today and I received the official word that the biopsy results showed that my Mantle Cell Lymphoma is back again. Of course, the ever positive Dr. Goy feels good about getting me back to good health. We discussed and agreed to a phased treatment approach.

The first phase will be a chemotherapy  referred to as R-BAC which is a combination of rituximab, bendamustine, and cytarabine. The plan will be for me to have four 21 day cycles. We are looking to have my port surgically installed sometime next week and then we can begin my first cycle at the beginning of the following week, Monday April 27th. This will be 3 consecutive days.

Once I have successfully completed R-BAC, the next step will be me getting a DLI (donor leukocyte infusion). This is an infusion in which lymphocytes from the original stem cell donor are infused, after the transplant, to augment an anti-tumor immune response or ensure that the donor stem cells remain engrafted. These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells.

Once the DLI has been successfully completed the next step is CAR T-Cell Therapy. This is a treatment that will engineer my immune cells to treat my MCL. Depending on the timing this treatment will being given to me at MedStar Georgetown University Hospital or The John Theurer Cancer Center at Hackensack University Medical Center. Doctor Goy is very excited about this treatment… so of course I am excited about it as well.

As you can imagine this was a very long day with and lot for me to process. I am confident that we have an excellent plan and that it will result in a successful outcome for me.

In the meantime I will live my life in as normal a way that I can. As a matter of fact I receive my last infusion of the first cycle on Wednesday, April 29th. I will follow this with me boarding a plane two days later to go to my Goddaughter’s wedding on May 2nd. The way I see it is life is meant to be lived… no matter what obstacles we face.

Cast all your anxiety on him because he cares for you.
1 Peter 5:7

More to come…


http://mantlecell.blogspot.com/

Sunday, March 29, 2015

Next up… Biopsy

3/29/15 – Last year on April 2nd I started back at work following months of recouping from my Stem Cell Transplant. This year on April 2nd I will be having a biopsy to gain a better understanding about my latest relapse. Boy, what a difference a year makes. 

Unfortunately, I am pretty sure I know what the results of the biopsy will reveal. For one it should confirm that my MCL is back. Secondly, it will find that my MCL is more on the aggressive side of things.

So if we already know what the results will be why put me through this? Well the reason we need to go through this next,important step, is to help determine what the best course of treatment will be for me. 

To be honest, I am not stressed over my MCL being aggressive. It really is the nature of the disease. I have dealt with this before and I am confident that I will do so again. The thing that makes me a little anxious is that I just want to know what the plan is and then I just want to get going with it... The waiting is always the hardest part.

With today being Palm Sunday I wanted to share a fantastic song with you. It is called “At the Cross (Love Ran Red)” by Chris Tomlin. Here is link to the song. Enjoy!

But God shows his love for us in that while we were still sinners, Christ died for us.
Romans 5:8

More to come…

http://mantlecell.blogspot.com/