I am a survivor. Five years ago, I was diagnosed with Acute Myeloid Leukemia (AML) with a prognosis of less than 90 days to live.
The doctors outlined a plan that might help slow or possibly put the disease into remission. It was grueling and painful with limited chance for success. I gave the plan a “thumbs up” and checked into Club Mayo (also known as The Mayo Clinic) for treatment.
What I had agreed to, terrified me. But I knew that it was what I needed to do, to live. There were two truly terrifying results of the planned regimen. One was that the treatment I needed, was designed to eliminate my bone marrow, which was the source of the cancerous cells circulating in my body. The other was that my immune system would be completely eliminated. The stem cell transplant that I would receive, would replace my bone marrow and provide me with a healthy immune system to protect me. What was truly alarming, was that there was no certainty that the transplant would be successful. My body could reject the foreign cells. If that happened, my body would not be able to make new blood cells. I would have no immunity. None. The doctors painted the picture that I could die from a paper cut!
During the process, there were several critical decision points. The options tended to be complicated. I had “chemo brain”, which is like the little brother to Alzheimers; difficulty focusing and processing information. I could not have made an informed decision. My husband became my advocate, champion and spokesperson. He met with doctors and nurses. He researched. He helped me make difficult choices.
Finally, the treatment was over and I was sent home. My new immune system was not yet functioning and I had very little physical strength. What I did have, was advanced chemo brain. I had a regimen that included over 60 pills per day, all on different timetables that I couldn’t manage. I could not remember the time or the day, much less deal with complex drug schedules.
I had doctor appointments several days a week. I had no idea which days and times those were. I couldn’t drive to them even if I could manage to remember them.
I couldn’t walk more than a few feet unassisted; I could not stand more than a minute or two without exhaustion. I couldn’t stand from a sitting position which meant I couldn’t get out of my chair or even off the toilet without help. I couldn’t get out of bed by myself. I couldn’t prepare food. I wasn’t hungry. I couldn’t feed myself anyway, since my muscles wouldn’t coordinate to hold a spoon steady. Basically, I was as helpless as a newborn. I depended on others for the things that I needed to survive.
The only thing that stood between me and a slow death was my husband. He cooked, he cleaned, he made sure I got my medicines on time. He got me to my appointments on time. He took notes of the new instructions that were given on each visit.
He was gatekeeper for those who wanted to visit. He made sure that I didn’t overextend and that I was not exposed to any form of bacteria or virus that would have been deadly due to my lack of immunity. He kept track of appointments and chauffeured me to them.
In the truest sense of the word, he became my partner in manifesting my return to health. He was devoted to his message that he was to help me. He was fierce and tireless in following that message. He definitely had my back 24/7.
I am eternally grateful to him for putting his life on hold and his needs on the back burner, to give me a chance at survival. Even though I was grateful at the time, I never told him so until much later. On the days when he was tired and discouraged, it would have meant a great deal to him to hear how appreciated he was.
Andrea’s husband, Paul
If you have someone who is giving their time and energy to help you, tell them “thank you”. Another way to show your appreciation, is to cooperate with them. When they bring your meal or your medicine, do not argue with them that you do not want it. If you aren’t hungry, thank them for their efforts and at least take a few bites. If it’s time to take your medicine, take it. When you don’t, it creates stress for them. Do not take advantage of them. If you can do small things for yourself, do them. Give your partner breaks where you can. When you are feeling well, let them know you are feeling good and acknowledge their role in your success. They will be grateful for your acknowledgement and support.
To those of you who are now caregivers, know that you are vital to your loved one. Their well-being and even their life are due to what you give to them. They may thank you. They may not. They may not yet understand that you are their lifeline.
As someone who was on the receiving end of what you are offering to someone else, I understand how much of your time, energy and life force you are giving. The message that I have for you is: What you are doing is important. What you are doing is vital. What you are doing is appreciated. The doctors are given the credit for recovery. Their role is important, but fleeting. Your role is even more important than that. You are the spiritual, emotional and physical support when it is most needed.
We all need support at different times for different reasons. Thank you from someone who understands what it means to receive total support.