I’m bummed out. I admit it. I had a lovely day planned: tea with a friend I have not seen in ages followed by a PALS visit at the seniors’ residence. Jelly was especially pumped about the potential for couch time with the seniors.
Then I got a call from the lovely nurse practitioner at the cancer centre. I had had routine blood work done yesterday. Stephanie informed me I’d gone from kinda anemic to mucho anemic. I needed two units of blood pronto, i.e., the next day.
Looking back on the last few weeks, I am not surprised by this news. I’ve not been not functioning well, as I’m sure J. could confirm. I’ve had an increasing number of bad, i.e., utterly exhausted, days. On Monday, I was napping by 11 a.m.
I didn’t take well to illness interfering with my real life for the day. As the medical needs associated with my illness are escalating, I am more often cancelling my best laid plans with short notice.
With a chronic progressive illness, little parts of me are being chipped away over time. First there was my livelihood and the joy of helping others. Then all the evening social outings that fell well past my bedtime. Lately, even yoga is a stretch. (Ha ha.) And dog walks are fewer and farther between. Having the energy to cook or bake is often too much these days. Unfortunately, this list may only get longer in the coming months.
But some activities I will maintain if they kill me. Yesterday I contacted my PALS team lead and told her I would be bailing on our visit today. And then I wrote the lovely ladies at the PALS office, the ones who initially welcomed my volunteering despite my precarious medical status, informing them of my situation and asking if I could continue participating despite my unreliability of late.
I was overwhelmed by the responses I received. It may be heartwrenching to tell people that I’m dying, but it’s all the moreso to receive such warm and supportive responses. The sadness at the news, the compassion and caring and kindness in response, and the openness to my doing what I can with PALS until I cannot possibly participate any longer…I was deeply comforted by their words.
I will do what I can to maintain a life outside my illness, knowing that sometimes medical needs will have to take precedence. It won’t be easy, and I’ll resent days like today when my real life is interfered with, but I’ll deal with it. Not with grace, mind you. I did say I was bummed.
Ironically, after waiting 5 hours at the cancer centre today, I learned that, because of my complicated body, my transfusion would have to wait until tomorrow. Had I foreseen this turn of events, both Jelly and I could have had our planned visits. Jelly missed her couch time for nothing.
Tomorrow morning, after yoga, I will head to the hospital for a dose of IV iron followed by the two units of whole blood awaiting me. Hopefully, these interventions will help vanquish those 11 a.m. naps, at least for a little while. Jelly and I have a PALS visit this Sunday. Couches and cuddles await.