In the past month I've noticed an increase in itching on my scalp, torso, and calves. There is no visible rash, but I've found myself absently scratching my chest or scalp. I went to a dermatologist and told her I thought I was having immunotherapy-induced dermal toxicity. The doctor quickly dismissed my concerns and said I was just getting old and that my skin was dry. She gave me a scrip for tub of lotion and told me come back in six months. I left feeling vaguely dissatisfied.
Yesterday I Dr. Maughan and his PA, Lindsay, and told them about my itching and the dermatologist's dismissive response. I also noted how I'd noticed that my bowel movements were looser than usual, which can be another indicator of checkpoint inhibitor overstimulating my T cells. Because neither was more serious than grade 1, and because my labs were all normal, we agreed that I'd still get my infusion of Opdivo while closely monitoring my body for any signs that my body might be reaching its saturation limit.Infusion #67 was unremarkable. Next month I'll have another CT scan before my infusion. <Yawn> I am so far past worrying about any anxiety on the scan results. Having had more than 40 scans has made me a bit blase about any single one.
An update regarding Jennifer: In the past few weeks she's had a number of additional tests and evaluations. Her doctors now believe with greater confidence that there is an organic component to her cognitive impairment. They have formally diagnosed her with dementia, and suspect that it is frontotemporal dementia. She continues to reside at the assisted living memory care center in Layton, and her acuity continues to slowly decline. She finds it hard to focus and frequently cannot remember what just happened. She uses a walker to assist with her mobility, and requires assistance in all of her activities of daily living.
I visit her daily, taking her water-based physical therapy, or to visit the grandkids, or go to church, or just get a treat like a cookie or ice cream. Her stamina is limited, and after a couple of hours she'll be ready to go back and take a nap. I'm glad that she is able to be at a place that treats her with care and compassion, and where she is able to feel safe and comfortable. While she no longer is able to focus on emails or texts, she enjoys getting old school cards and notes from friends and family. She keeps the cards in a large basket next to her recliner, and sometimes will look through them as if seeing them for the first time.
Dementia is a cruel disease, perhaps even more so for the family and friends who see their loved one's mind waste away. I have leaned to copy by simply dropping all expectations, and being grateful for the joys that I can find each day that I can see her. The greater test is on me, I think, for how I will respond, and how well I can continue to choose compassion and empathy. It is not easy, and at times I feel that my reservoir is being drained faster than it can be replenished. I'm continuing to feel my along, trying to do the next right thing while living one day at a time.
Glad you are stable as such with the cancer. So sorry you and Jennifer are having the extra burden of the dementia. I am sure God will help you to refill the reservoir as you need it. Always amazes me what he can get us through when we think we can't go any further. Will continue to keep you both in my prayers. My husband has now been put on hospice. His bladder cancer bone mets to his pelvis are so painful and he is so weak they are afraid trying the immunotherapy will end his life sooner than if not trying. Praying God will give me the strength to keep him home and get me through what I must.
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