“You look great. You have so much energy. You must be feeling good.” Daily I am bombarded with comments like this from well-meaning friends and relatives.
Sometimes I just want to scream, “It is all an act, a façade. I am exhausted and all I want to do is go home and sleep.” It is NOT just being tired…
I have 3 graduate degrees and pulled my share of all nighters. This type of chemo fatigue is different. No amount of sleep will bring back the energy like it did when I was worn out from working or studying. There are times when I get out of bed feeling like a bucket of lead is weighing me down.
I have been battling a nasty blood cancer called Myelodysplastic Syndrome for 7 long years. I have fluctuated in various stages from being in remission, partial remission and out of remission. This insidious cancer is always lying underneath the surface and ready to strike again, so I will be on chemo forever, even when the blood reports state I am in remission.
I was on oral chemo for 6 years, which made me exceedingly tired. When the cancer worsened, I was forced to change to 10 shots in the stomach and the arms for 5 days every month.Then I found out what malaise really means! I have suffered many of the common side effects ranging from diarrhea to chemo fog and weakness. Additionally, I was born hard of hearing and my hearing has deteriorated to where I am now profoundly deaf.
Most people would be surprised to hear me say that the worst side effect, besides the hearing loss, is fatigue. I am very social and always on the go. Throughout my life I have worked full time, gone to school part time and often worked 2 jobs. As a result, I have been fortunate to be of service in several fulfilling careers including librarian, counselor, and college teacher.
I was forced to quit both of my beloved jobs after the cancer was diagnosed. I was devastated because I love to work. However, I am learning to parcel my energy.
What does this mean? The definition of parcel is “the act of separating or dividing into parts and distributing, allotting or apportioning.” I know now that I need to allot so much energy to each task I do. Especially during chemo week, I can only perform one major task each day. All of my energy goes into that activity, whether it is meeting with friends for dinner, conducting an educational program with my hearing ear service dog, or working at home on bills and correspondence. I give all I have to that task and then head for bed and collapse.
I made other life changes. I added an extra career to my resume, which is writer. This career can be done on my own timeline. If I feel a little more energy I write and if not I don’t. I take cruises for vacations, so I can rest in between stops at tourist points. For my volunteer work, instead of showing up weekly at an agency, I send cards to persons in my church and can do that on my better days. I also do programs with my service dog and that is the only event for the day.
Now I no longer feel like a fraud when I am told I look wonderful. I have no desire to explain to people I really feel lousy and want to go home and to bed. I smile and say “Yes, I feel good today.”
All cancer survivors need to find their own path to kicking cancer’s butt!!! It is truly a process. My energy is mostly gone, but I pace it to do the activities that are the most meaningful to me. The best part is I am learning what is most important in my life, which is spending time with much loved friends and family!