“Thanks for keeping me alive, but I want more.”
I feel like one of the worst people in the world by owning these feelings. I can’t suppress them. Not speaking them feels worse. For me the clinical trial (for alectinib) that I am on requires me to complete quality of life (QOL) surveys every so-many-weeks. It is a pretty good attempt to capture how I am doing by asking questions like, “In the last week have you had diarrhea? In the last week, have you vomited? In the last week has your condition impacted your social activities?” And my favorite, “Over the last week how would you rate your quality of life?” My answer is most frequently 4 out of 7. Selecting a number, a reoccurring image pops up – my brother giving me a pin that shouts, “Hey, my life is shit but thanks for asking!” I smirk while circling the 4.
Seriously, I rate my quality of life 4 out of 7, consistently. Why do I accept that this is the way it is going to be? Is it because I have cancer? And life with cancer is supposed to be unsatisfactory? subpar? undesirable? miserable? I don’t think my care team or individuals who created my medication would jump on board and agree that I’m simply stuck in displeased land. In fact, the opposite is likely true. The community that surrounds me diligently works to ensure I am well taken care of and happy.
So, what’s with this low QOL? One component that seems to be not pulling their share of the weight is me.
A poor self-image plays a large part in this. I am filled with sadness looking at my unclothed body. Skin is blotchy, arms and breasts striped by stretch marks, wispy hair mostly covers my scalp, and swollen feet ache at the base of it all. Quickly I cover up in my robe. Getting dressed it dawned on me I need to put on non-pajamas – wear a necklace – whatever it takes to reset this attitude of mine.
For some people its new bath towels. For others, it is a new pillow. For me new undergarments. This drawer has not had many new comers since my diagnosis almost 6 years ago. Very sad. Not now though, I have several new soft under britches and bras that fit. Not because they are so old and stretched out, but measured to fit for my body. Now that’s what I call precision medicine.
Getting rid of the old dingy stuff is exactly what I needed. Dressing for the day I feel good about myself. Not to say I don’t have other drawers that might be hiding items that need to be set free. That will happen another day. This little change has boosted up how I rate my quality of life.
