Side Effects: The Catch 22
According to the oncology industry, this is "very well tolerated." Studies show that only a small percent of patient's had to stop treatment during clinical trials dueside effects. As the triage nurse who hears from patients on a daily basis who are going through a wide variety of cancer treatments, I was cautiously optimistic.
Other than some serious itching and increased tiredness, the first cycle went well. I had an occasional wave of nausea here and there, but nothing intolerable. About three days after the treatment I felt my worst but recovered after a couple of more days.
The second cycle hit me a bit harder. During the first week after treatment I did notice an increase in fatigue, but not much else. The itching wasn't as bad. I did use Ranitidine over the counter (Zantac) now and again, it wasn't needed daily. However as the weeks progressed, I felt worse and worse. The fatigue was disabling. All I wanted to do is sleep. The thought of engaging in any meaningful task exhausted me. Other than drag to work, home and sleep, the next three week interval was depressing. The closer it got to my third treatment I was questioning if this was what I wanted to do. I wasn't wanting to go take a spin class or shopping trip to the mall.; all I wanted was enough energy to go to church. Maybe open my computer and write or at least desire to pick-up a pen and doodle.
By the time of my third treatment I was miserable. Joint pain and muscle pain was at an all time high for me. Every joint, down to my fingers and toes ached. I was tearful and exhausted. My oncologist wanted to rule out some obvious root causes to the tiredness, like sleep apnea. Surely this was bigger than sleep apnea! Yes, I look like a perfect candidate for sleep apnea, I am morbidly obese and I'm not doubting it can be an issue, but this was directly related to my treatment.
My thyroid level was checked and the TSH of 14 confirmed why I was miserable. My Palliative Care Nurse Practitioner suggested a low dose Prednisone and Ritalin to keep me functioning and able to work. Then I was referred back to my primary care physician to try and take care of the out of control TSH. It was at this moment that I suddenly realized the absolute frustration of our patients. Oncology creates these side effects with treatments, but usually want to send patient's elsewhere to have the problem treated.
Clearly all of the evidence in literature supports the fact that the Pituitary gland can be adversely affected by this treatment. It is our master gland in charge of our endocrine system directing the hormones, like TSH in our bodies. My primary physician increased my existing dose of my thyroid medication , a very small amount.
Meanwhile, the patient who just happens to be a nurse is encouraged that things "could be so much worse." Some people on this treatment regimen have horrible immune reactions. I could be hospitalized with a terrible pneumonitis (an inflammation of the lungs). Or I could be plagued by a miserable colitis (inflamed colon) . Even though that's true, my side effects are effecting me! They are interfering with my quality of life. Had I been told I wouldn't have the energy to go to church or even read a book, I might have reconsidered.
Therein lies the great dilemma. As I complained to another physician in our office about feeling "over sold" on how well tolerated this treatment can be, he reminded me that if we told our patients they were going to feel horrible, no one would choose treatment. The truth is some people do well, some do not, and most are in the middle, with a few good days and a few bad days.
I would love to tell you that I'm such an intelligent, well balanced nurse that I new there would be challenges and I faced them with my head held high. Reality is, though, I have not been my usual chipper self. I don't like being sick. I don't like feeling like I have no options. I don't like feeling like my independence is declining or that I need a lot of help. I have cried, I have whined and I have complained. The prednisone has given me the strength to work and the Ritalin has helped me stay awake and feel like I could accomplish something.
Approaching this final round, I've had some memory issues that have concerned me. Everyone has forgetful moments, these just seem a little more peculiar.
"Very well tolerated" is a broad general term . Truth is, though, people bring a lot of other baggage into their treatments. An already rocky marriage or financial challenge is only going to add to expected side effects. In the past year preceding this diagnosis and treatment, I have been grieving the tragic death of my son. Pile a big dose of grieving on top of innocent sounding words like fatigue, nausea, muscle pain, and it is easy to start blurring the lines between treatment side effects and depression. On top of all of this, I've downsized from a house to an apartment in the past 9 weeks. Looking at it realistically, it's a recipe for disaster and disillusionment.
I have been blessed with some great friends and coworkers. It has been humbling to allow them to help me as I've struggled through the past 12 weeks. From moving, to rides to my appointments, to letting people fold my laundry or cook a meal, it's been hard to just breathe and let someone else jump in and do it.
Here it is 11:00 a.m on Labor Day and I haven't taken the prednisone or the Ritalin and I feel like myself. I could go so far as to say I'm having a good day. But day after tomorrow will be my next treatment and the roller coaster ride starts again.
Lessons learned in this first phase of treatment:
Everyday is different from the next so don't assume bad days last forever or that good days mean you are over the worst.
Yes, it can always be worse, but it doesn't change the fact what you are feeling is legitimate.
Cancer treatment will magnify whatever life problems you were already experiencing before started your cancer journey.
Accept help and allow people to be nice.
Comments
Post a Comment