Days 0, 1, 2: A CLL Patient Story

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Written by Tamara Fowler

Let me begin by saying that no matter how much we read and researched, nothing could fully prepare me for this most miraculous, exhausting, humbling experience. I am thankful for my God. I have no clue how anyone could go through this without His constant source of strength and peace. I am thankful for MDACC and the amazing team of doctors, nurses, and staff who combine incredible expertise with care and kindness. I am thankful for my husband. He is the air I breathe. I am thankful for my mom and her gentle presence, and all my loving family and friends who have stayed in regular contact and have kept me diligently in their prayers.

I haven’t felt well enough to write, so I’m going to catch up while I can. Today seems a little better. Let’s go back to the night before my transplant….

DAY 0

Everyone says that the actual transplant day is probably the most anti-climatic of the entire ordeal. I knew that. But anxiety definitely got the better of me during the nighttime hours before Day 0.

The ATG I had received on Days -2 and -1 elevated my blood pressure and heart rate. I normally have low/normal BP and a resting heart rate of 68. It has now been “resting” in the 90’s and spiking to 144 BPM. I feel like I’ve been running a marathon that never ends.

With my heart already racing, anxiety over the transplant…more about what comes after…took hold. The only sleep I could count that night was when I got out of my hospital air bed and pulled my IV pole over to the Murphy bed where Paul was sleeping uncomfortably. I spooned up next to him, and with his arms around me I was finally able to relax. An hour and a half later, I woke to realize that his entire left side had to be asleep and in pain, but he never moved me. When morning came, my heart was again racing and the tears were following. I can’t really explain why. It was all so incredibly overwhelming. This treatment is not just chemo attacking the bad guys so the good guys can take over again. This is chemo that kills everything, and then being re-born at the most basic cellular level with someone else’s baby stem cells carrying the hope that they will make a home at their new address.

Just when I thought my heart would beat out of my chest, God sent an angel. Her name is Myra…a sweet, older nursing assistant that had been assigned to my pod for a couple of days. She came in, wrapped her loving arms around me, and from her lips and heart delivered the best sermon and testimony I’ve probably ever heard. “…Don’t let the devil bring those tears. GOD is ALL you need!”

About 10:30am, Janet and Meaghan started my pre-meds, then from 10:45 to 12:50, 90,394,000,000 (that’s 90 Billion, 394 Million!) baby stem cells made their way into their new home through my CVC. Amazing. Just another bag on my IV pole. But it was the bag of life!

Day 1

Constipation was the word of the day! Because of the high doses of pain meds, etc. needed to combat the pain from the killer chemo, I was stopped up to my eyeballs. The long and short of this day was ingesting several doses of senna and Miralax, followed by a Lactulose chaser. That finally got things going, after a walk that had me in tears both physically and emotionally. We had to get that moving so I could get started on my day-long Rituxan. All in all, it was a miserable day (except for a nice mid-afternoon visit from business buddy, Dave Kinler, who was at MDA for his tests). The team decided on one more round of senna and Miralax in the evening. I don’t think that was the best idea…. Things then went the other direction. Ugh! Just to put it in perspective, the morning of Day 1, I weighed in at 130. Twenty-four hours later, I was down to 122 lbs. That’s a lot of poop!

Day 2

Last night was the most sleep I’ve gotten all week. While I was still up documenting “output” every 1.25 hours, I was able to sleep some in between. In between 11:30pm vitals check, 3:30am vitals check, 4:00am labs, 5:00am blood draw to check Tacro levels (done M/W/F from arm, not CVC). 🙁 In between tummy cramps and trying to find a comfortable position without getting tangled up in or squishing all the tubes protruding from my chest. In between all that, I slept great! 🙂

My amazing doctor team came in this morning and declared it to be official recuperation day. It’s been a busy, hard week. My goals today were to get dressed (check), go to the exercise therapy class (check), get a nap, and prepare myself for the next phase…waiting to completely bottom out, then the slow climb up.

 

About the Author:

My name is Tamara Joy Fowler and, in the summer of 2011, I was diagnosed with chronic lymphocytic leukemia with 17p deletion, ZAP 70 positive, IGHV unmutated. This all came as quite a shock!  I was a healthy, happy 50 year-old lady who ate right, exercised, and took Geritol everyday.  Just kidding about the Geritol, but you get the idea.  I have been married since 2010 to my high school sweetheart and have had every intention of living and loving to a ripe old age.  I still do.  There just seems to be some complications that have to be taken care of first.  This is the story of our journey.  It is “our” journey because I am not alone.  My sweet husband Paul, our children and grandchildren, and our entire family and many friends are part of this journey.  Each one touches my life in a different way, and I have had the blessing and opportunity to be a part of theirs.  I am one of God’s children and rest my faith and trust in Him.  I have seen miracles galore over the years.  I, and thankfully many others, am praying for one more.

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