I want my life back.

Source: Marc-Olivier Jodoin, Unsplash

Deflated, frustrated, fed-up are some of the emotions I’ve been feeling over the last week. Maybe it’s because my hemoglobin levels were low, or that I was dehydrated because I can’t keep food from passing right through me, or the abdominal pain from chronic cramping…. or all of the above. They say the gut contributes to mood so I guess it makes sense.

I’m having a lot of sadness about my old life this week. As I spend day after day out of the last 5 months on the couch I daydream about what I used to be able to do with my body. The ski trips, the diving, the spin classes, the walks with Troy, are all something I can’t even fathom doing right now. I dream of one day getting better and moving out of the city to a mountain town where I can have a slower paced life but one that is rich with living. I long for the feeling of running my hands through an herb garden, of being able to get in the car and go for a hike on a moment’s notice, and the feeling of not being confined to the couch.

I have faith that I will get there one day but with each stomach cramp (and they are frequent these days) I am reminded of the long and arduous path to get there. I should have another CT scan at my next infusion and that should tell me whether all of this pain is worth it. The signs seem to point that I am improving which is good. My carcinoembryonic antigen levels continue to go down, the ascites fluid that plagued me during the first few months of this journey is also decreasing day by day which would indicate that something is shrinking and letting the fluid flow through me naturally. My vitals and blood panels also continue to look good week over week.

Cognitively I know the signs are there that I am improving but emotionally I am tired. I know Troy is tired too and misses our old life. It kills me to see the burden he has to take on as my caregiver. We’ve done what we can to get help from our friends and family but the day to day toll is the hardest part. Troy and I have been incredibly fortunate in that his work supports him working from home when I need him but that too pains me because I know that further amplifies the feeling of being trapped by this disease.

I am reminded every day when I look in the mirror of my disease. I joked yesterday with the infusion nurse how I wanted nothing more than to have fat back in my arms. I used to spend so much time and energy poking at those stubborn fat areas yet now more than ever I long for the luxury of additional padding. It would certainly do my tailbone a few favors when I sit on hard surfaces. I yearn for strength and energy and to feel tired again from working out, not from the necessity of having to walk up and down the stairs to my flat.

I am hanging on to hope but as my patience wears thin I want nothing more than for this to be over and for me to feel like myself again.

-Brynn