I am a person who always was able to sleep and would generally be out before my head ever hit the pillow. Now I found myself tossing and turning for hours at a time. I would try reading, but then would just delay my sleep longer. Ironically, the cancer and chemo were making me even more tired, and I needed the sleep more than ever so my body could heal. What was happening to me?
I soon figured out I had insomnia. The American society of clinical Oncology (ASCO) defines it as “The experience of having trouble falling asleep or staying asleep during the night.”
ASCO goes on to say that most people experience insomnia at some time in their lives, but the risk increases with cancer. This has been a long hard road for me since me since I was diagnosed eight years ago. We all know as cancer survivors when we lay in bed unable to sleep we begin to worry about the cancer, treatments and what the future holds for us. I got less than two hours of sleep from insomnia before my last bone marrow biopsy and my adrenaline was so high that the usual sedatives I was on did not work to put me in a twilight zone. That was not fun!
Sadly, I made a huge mistake that I want to prevent others from making. Doing research, I found a statement that hit me like a ton of bricks. Paula Schlembach M.D., of the University of Texas MD Anderson Cancer Center, “Don’t hesitate to discuss insomnia and other sleep issues with your doctor.”
I have the most compassionate oncologist possible, and she always asks me if I have any questions. I complain (yes, complain is the word) of fatigue all the time. But I waited over five years to mention the insomnia. She then informed me that many cancer patients suffer from insomnia, and she could prescribe a medication to help. She explained that with the side effects and anxiety of having a cancer diagnosis, insomnia is common. I use the medication sparingly but it really is a huge help - especially the night before a bone marrow biopsy!
Cancer survivors need to realize that sleep increases the immune system to fight infection, which is extremely important.
I cannot summarize all of the treatments and effects of sleep disorders in this article. However, for serious ones like sleep apnea, which causes the patient to stop breathing for 10 seconds or more at a time, a referral to a sleep clinic is important.
I did cull out some helpful information to share for insomnia in general. Since people with cancer often are prescribed different medications, many of these cause insomnia. The patient should always read the information provided with each prescription. Also – keep it on file for future reference because you may not experience symptoms immediately. I also think to myself that there may be future meds that are not compatible with each other. I am so guilty of tossing these brochures in a wastepaper basket, but will not do this anymore! Another suggestion I didn’t like was to avoid caffeine. I truly am the queen of caffeine and it got me through many long nights writing a dissertation. However, I was much younger and still could sleep after drinking it all night long. However, it takes up to eight hours from one cup of a caffeinated beverage to wear off. Avoiding caffeine eight hours before bedtime is doable even for an addict like me!
We each need to find an outlet to alleviate our stress, whether it is light exercise, yoga or meditation. Sometimes, these are offered in the LIVESTRONG programs at your local YMCA. It also helps to talk to a friend, and I have broken down more than once to cherished people who allow me to vent. It is ok to be vulnerable, which I wrote another article on!
My oncologist has mentioned side effects from chemo. Intractable diarrhea and chronic urination have been terrible side effects for me personally. This is another instance where the doctor/patient relationship is invaluable and cancer survivors need to confide in their oncologists. That person in turn can refer the patient to a specialist, or help with medications to treat symptoms.
Finally, most cancers have pain associated with either the cancer or treatment. Dr. Schlembach encourages patients to tell the doctor about any pain. I have to add something to this. A wonderful ob/gyn told me after a hysterectomy many years ago to NOT be brave and reject pain meds. She explained these help with actual healing. I have never forgotten that advice and we need to forget about being warriors when pain rears its ugly head.
In summary, insomnia is an unavoidable side effect for us. But it can be helped by confiding in your doctor, becoming an expert on your meds, knowing how to eliminate stress and being informed overall. It may not go away, but it could get better. And - if you are like me you just might wake up less grumpy!