Tuesday, June 30, 2015

Low Blood Pressure = Trip to the Hospital

6/30/15 – My chemotherapy days for cycle 3 (June 17-19) seemed to move well. We had a planned follow-up on June 30th but this ended up being too long a span of time to wait to check my counts. The good news is that I have not run a fever but I started to feel weak and tired around June 25. By the time June 27th came around I was also very light headed. On June 28th I could hardly stand up. My wife took my blood pressure and it was 67/45. This definitely explained my lightheadedness. We decided to call the Cancer Center and was told to get into the ER. It was very likely that I needed blood and platelets. Going to the ER at Hackensack University Medical Center always stresses me out a little. It’s not because you get bad treatment there… because you do. They even have a separate Oncology ER and they have private rooms…… it is because the hospital usually does not have hospital rooms available in the oncology section and you end up being in the ER for many hours and sometimes days. This ended up ne the case with me. I never made it to a hospital room. All my treatment this go around would be in the ER.

My treatment in the ER began with checking my counts and confirming that I was running a very low blood pressure. My counts were very low across the board.  As luck would have it, my favorite infectious disease doctor was in the ER (Dr. Sebti) and he stopped in to see me and reviewed my counts. He and my oncology team collaborated on a plan which was to give me bags of platelets, 2 bags of blood and precautionary antibiotics due to my 0.6 white blood cell count.

Over the course of Sunday, June 28th and into the early hours on Monday, the 29th I received all the prescribed treatments. When my counts were rechecked they were all back at safe levels. My WBC was now 1.6. I was released later in the day on Monday because the ER was able to give all the treatment I needed. Also, my blood pressure recovered a little. I was running about 95/55. I typically run low. As my counts raise over the next week the thought is that my blood pressure will go to normal levels. I have a follow-up scheduled at the Cancer Center on Thursday, July 2nd.

So… this whole hospital visit could have been avoided if my follow-up appointment was scheduled earlier. I am going to have to pay closer attention to this. I am pretty sure a follow-up should happen no later than the 10th day of the cycle.

I am feeling much better today and looking forward to a great month of July.

Here is a link to a great new song by Third Day. It is called “Soul on Fire”. I sure hope I can carry the words and energy of this song into July and to my daughter’s wedding.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.
Jeremiah 29:11

More to come…

http://mantlecell.blogspot.com/

Wednesday, June 17, 2015

Cycle 3 begins early

6/17/15 – Today I started my 3rd cycle 5 days ahead of schedule. The thought with jumping into my treatment a little early is that it will give me a longer recovery period and hopefully help me meet my goal of being at my daughter Jill’s wedding with plenty of energy. I truly appreciate that Dr. Goy and team are working towards helping me achieve personal goal as well as health goals. I believe it is extremely important that I take every opportunity to live life and not allow my health challenges to keep me away from life’s big events.  

After this cycle I will be having a PET scan which is scheduled for July 6th. Depending on the results of the scan there is a chance that I may not need a 4th cycle. This would allow me to have the DLI sooner than we had planned. This, of course, would be awesome.
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.

Certainly I have a lot to look forward to. This again makes it clear to me just how powerful it is to believe, have faith, have trust in God and prayer, and to never lose hope.

Here is a YouTube link to a great song about hope. "My Hope is You" sung live by Third Day.

You will be secure, because there is hope; you will look about you and take your rest in safety. You will lie down, with no one to make you afraid, and many will court your favor.
Job 11:18-19

More to come…

http://mantlecell.blogspot.com/

Friday, June 12, 2015

Released With Good News

6/12/15 – I’m back home again. I was released on Thursday, June 11th at around 8:00PM. This seemed to make sense being I had not run a fever since I was admitted. Sure my doctors want to know the source of the fever but it really doesn’t make much sense to keep me in the hospital when all the tests have come back negative. This includes a piece of good news. I tested negative for para-influenza. This means that my immune system fought off something that any typical adult immune system would be expected to do.

I also learned of more good news. The CT scans revealed that my tumors (nodes) have significantly reduced in size. This was awesome to hear. It is great to know that all I am going through is producing positive results.

I am looking forward to build this positive momentum as I get ready to begin my 3rd cycle.

Commit your way to the Lord; trust in him, and he will act.
Psalm 37:5

More to come…

http://mantlecell.blogspot.com/

Wednesday, June 10, 2015

Is This Really Happening? I’m back in the hospital

6/10/15 – It sure is great to be home. On Monday, June 8th I had to head back to the cancer center where I had a checkup and received fluids to keep me hydrated.  On Tuesday, June 9th I put in a full day working from home. I did have a bad cough for most of the day but was feeling pretty strong. After I shut down for the day my wife Sue asked “Can I take your temperature?”  I have to admit, this is not my favorite questions. My temperature was 100.2. Although this is OK, it is getting close to the magic 100.5 where we have to call the cancer center. About 20 minutes later we took my temperature again and it was 102.00. We called the cancer center and were told to head down to the ER. Upon arriving at the ER my temperature was 102.02.  It was decided that I would be admitted. I made it into a room 12:30PM on the next day (Tuesday. June 10).

The current thinking is that my body is having a hard time fighting the para-influenza. To be safe, I was sent for a chest CT and had more blood cultures pulled. Also, I will be observed for a while to see if I spike a fever again.

Now it’s a bit of a waiting game. This is a long road for me. Even though I have hit a series of bumps in the road I cannot let it get me down. I just need to keep pushing forward to the goal of good health.

And endurance produces character, and character produces hope
Romans 5:4

More to come…

http://mantlecell.blogspot.com/

Sunday, June 7, 2015

Another Unscheduled Stay in the Hospital… Urgh!

6/7/15 – My plans for the week of June 1st was to work from home. With my past episodes of passing out it would probably best I stay close to home at the watchful (and loving eye) of my wife Sue. Of course this would also include her frequently checking my temperature and making sure I eat and do not over do things.

As the week moved on we noticed that my temperature was gradually increasing but not to the point of worry. Wednesday ended with my temperature running between 99.8 and 100.2. On Thursday, June 4th, around lunch time, my temperature hit 100.5. We called the Cancer Center and they wanted to see me ASAP. I met with Dr. Alan Skarbnik. After reviewing my blood counts and test results it was determined that my counts were low across the board. They also found that my para-influenza was still an issue. I was sent to the infusion room for platelets and IV antibiotics. In the meantime they decided that I would be admitted.

I made it to my hospital room around 9:30PM. My room was a single being I need to be in isolation because of me still being positive for the para-flu. Also, I am now considered a “Fall Risk” due to my passing out issues. This means I cannot get out of bed unless someone is with me. Anyone who knows me knows how much I dislike being in the hospital. I'm probably just like most other people… I struggle sleeping, eating and I am counting the minutes to when I can go home. Being isolated with limits on my movements just added to my displeasure of being in the hospital. Of course my wife Sue was by my side most of the time. She is just so great to me and I am very thankful for her. 

Over the next few days I would get a blood transfusion, Neupogen and a continued dose of antibiotics. Each day I would anxiously await the results of my blood tests. Finally on the morning of Sunday, June 7th all my counts hit an acceptable level and I was able to go home.

This wasn’t a long stay (4 days, 3 nights) but it does cause me to worry. With my next cycle beginning on June 22nd, I need to make sure that I am feeling well and full of energy for my daughter Jill’s wedding on July 24th. The last thing I would want is for my treatments to cause me to not be there or to be there but not energetic. I need to have a conversation with Dr. Goy to see what we can do proactively to ensure I am at the wedding with bells on.

Strengthen the feeble hands, steady the knees that give way; say to those with fearful hearts, Be strong, do not fear; your God will come, he will come with vengeance; with divine retribution he will come to save you.
Isaiah 35:3-4

More to come…

http://mantlecell.blogspot.com/

Sunday, May 31, 2015

Cycle 2 Treatment Complete… with another trip to the ER

5/31/15 – I received my chemo treatments for cycle 2 on May 26 – 28. For some reason at the end of my last day of chemo, and a couple of days that follow, I get the feeling of being bloated. This leads to a loss of appetite and feeling nauseous.

On May 29th I worked from home. Although I felt good throughout the day, I was pretty exhausted at the end of the day and continued to feel bloated and have a loss of appetite.

On Saturday morning, May 30th I had to be back at the cancer center for my Neulasta shot. After I received my shot my wife and I figured we were so close to her sister’s house that we would pick up coffee and donuts and stop by for a visit. Unfortunately this plan didn’t go so well. While we were standing outside saying hello I felt weak and I passed out. Before I knew what was happening an ambulance showed up and I was on my way back to the hospital. After a few hours of receiving fluids and being checked out in the Emergency Room I was released. It seems that this latest passing out episode was due to dehydration. I need to do a better job at keeping my nourishment up. No matter how the chemo makes me feel I need to drink plenty of water and make sure I keep up my strength.

There is no doubt that I have a knack to keep things interesting. 

But whoever drinks of the water that I will give him will never be thirsty again. The water that I will give him will become in him a spring of water welling up to eternal life.”
John 4:14

More to come…

http://mantlecell.blogspot.com/

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/