Ups and Downs

First, my most recent blood tests show no m-spike.  Also, my free kappa light chains and free lambda light chains are normal. I remain in complete remission. I am so thankful to the Keep Pounding Rob Team for your friendship, support, encouragement, and prayers. 

One of the biggest adjustments to life with multiple myeloma and being on a maintenance therapy is the uncertainty of what each day will bring.  On a macro level, as I mentioned in an earlier post, there is no cure.  Relapse is almost a certainty at some point.  Whenever I have a blood test, it is in the back of my mind that relapse is a possibility. 

Today, I will focus on the micro level.  Each day it is difficult to predict how I will feel.   Most days I feel good.  Still slow days are common. Overall, I feel stronger mentally, physically, and emotionally with each passing day. 

Also, I am experiencing that how I feel can vary by each round of chemotherapy.  Each round consists of three weeks on chemotherapy and a week without chemotherapy. Most rounds of chemotherapy, I will a have few days (3-4) of noticeable fatigue and nauseous.  My chemotherapy round in May of 2020 was the worst round since I started maintenance therapy. That round I experienced between 14 to 17 days of nauseous, fatigue, and pain while taking chemotherapy.  I was exhausted by the time the week of respite from chemotherapy arrived.  Fortunately, this round has only had one rough day with this being day 12 of taking chemotherapy.

Neuropathy in my feet is my main side effect from chemotherapy.  My feet are either cold, burning, or have sharp stabbing sensations.  The best relief for me is exercise (e.g. walking or using a stationary bike).   I try to exercise four to five times a week for one to two hours a day.  Without exercising, I am up at night with the pain unable to sleep.  Sometimes, I use most of my energy for the day to exercise to control the neuropathy pain and build up strength to fight myeloma.

Friday, I woke up and felt like I hadn’t slept.  I went to walk and struggled unexpectedly. In the days before this walk, I could walk for an hour at a solid pace of around four miles in an hour.  After 30 minutes of walking and hitting the two miles, I was out of energy.  I felt nauseous.  I was a mile from the parking area and it took me over 30 minutes to walk that distance.  I came home and slept for four hours.   

Saturday, I woke up feeling much better. I was able to set my best time for a 5k at 40 minutes.  

I share this experience to illustrate that while on maintenance chemotherapy, myeloma patients can have good days and bad days.  Sometimes these bad days can become weeks or even months.  The extended periods happen from infections due to our impaired immune systems.    

In our journey with multiple myeloma, we have our ups and downs.  My goal is to continually learn how to make the most out of both kinds of days.  Whether it is a quiet day reading, playing video games, watching movies, and napping, or a day where I can be more physically active and adventurous within the new limitations imposed by COVID-19.