Recently my world has been touched by death. Lots of death. Since early January two friends have lost their husbands through unusual circumstances. One of these deaths remains unexplained and the other happened because of a horrible mix of black ice and bad timing. I find it nearly impossible to know how to comfort a young widow other than to hug her and let her know I care. Sudden and unexpected death reminds me how lucky I am that despite having cancer there is every reason to believe I have lots of time left on this planet.
Last week my uncle died after living with dementia for many years. He was an intellectual and if given the choice probably would have chosen amputation of a body part over losing his brilliant mind. Our relationship was, shall we say, complex. The relief over the end of his suffering is melded with a lifetime of guilt and other family weirdness so letting go of my uncle was difficult for me. For all of us.
Finally, one of my mother’s lifelong friends died in her sleep. She was one of those people who was part of the community who raised me. My memories of her include riding in her old Model T Ford which had holes in the floor so we watched the pavement go by as a gaggle of kids bounced around in the back seat. That ancient car was an oddity in our suburban neighborhood and it was just one of the quirky ways in which this dear lady let us know it was ok to be different. Without trying to she taught me being true to your own vision is the gold standard of living an authentic life.
January has been hard.
My Lymphoma has been very well-behaved since I had treatment in April. I continue to have Rituxan infusions every other month which I tolerate fairly easily. The Hospital Infusion Center got a major remodeling, which makes a huge difference for patients. The chairs are new and comfy. There is a lot of space so we have privacy unlike the old room where we all got to hear the intimate personal and medical details of our neighbor’s lives. There are windows with natural light and there are even vegetarian choices on the menu.
IVs remain a challenge because my veins do not like to cooperate. I drink lots of water before the infusions to try to give the nurses something to work with when they insert the IV. Some months it goes well. Other months the bruises make it look like I look like I got into a fight. Fun with needles is just part of this effort to stay healthy and alive. It is an inconvenience more than anything.
I will probably continue Rituxan infusions as long as my insurance company cooperates. The standard protocol is 2 years of “maintenance” every other month but some practitioners extend this course of treatment. Others say maintenance does produce a stronger remission but does not extend life. The research is unclear in part because life expectancy is extended so long not enough people have died for studies to be conclusive.This is the kind of uncertainty that makes someone like me happy. For now, we will continue Rituxan every other month until a conclusive study suggests we stop or try another therapy. That is, unless the insurance company cuts me off, which is a possibility.
For now, my blood counts are better than they have been in my adult life, I have no fatigue and there are no visible nodes. I can live with that.