Laurie Tinsley Robert's Daily Report

First post: Jun 13, 2022
Robert and i have been married for over 20 years. Half of our marriage has been spent battling his cancer. In 2012 Robert was diagnosed with Stage 4, Metastatic Squamous Cell Carcinoma ( Throat Cancer ).  He had 28 lymph node removed on the left side of his neck, 10 rounds of Chemotherapy and Radiation treatments daily. The treatments were successful until 5 years later there was a reoccurrence. So more Chemo and radiation treatments were needed. After the treatments were over his cancer was still there, but shrunk considerably. He had scans done every 3 months to keep observation on progression. After one year his cancer began to progress and Robert was placed on Keytruda, a immunotherapy treatment. He was now considered a palliative care patient. 

Robert did well on the Keytruda for the first 2 years and so he was given the option to continue with the treatment that would usually end at the 2 year point. Robert had one more year of Keytruda before I started noticing things were going wrong. He started sleeping most of the day and night, didn't get out of bed for days, no longer had the desire to see friends or do daily activity. He wasn't eating much and began to lose a huge amount of weight.  I reported this to his cancer care team, but the Oncologist didn't find it concerning. It was also getting harder to control his glucose level. Eventually Robert went into a DKA and was in a coma for 4 days. He recovered and was referred to a endocrinologist.  Shortly after the DKA he started having unbearable stomach pain. Another trip to the hospital was made and he was diagnosed with Pancreatitis and Colitis. Bother were caused by the toxicity that immunotherapy causes on your body. 

Robert's Oncologist stopped the immunotherapy treatments so his body can have time to heal. There is a small chance that he might be able to go back on treatments at a later time. For now Robert's cancer is being monitored with tri-monthly scans.  

It has been a rough road the last 9 months. Robert does not have the energy he used to have. A simple chore wears him out for the rest of the day. Robert is also depressed, spends most days in bed or on the couch. He sleeps most of the day and eats very little. He sometimes is weak and has a hard time walking. He has blackout spells which could all be caused to other medications he takes. Robert says that he is tired of battling this disease, even to the point of stopping all Cancer Center visits or possible future treatments.  As his caregiver, I am tired too. I see him suffering everyday from this horrific disease and watch him deteriorate on a monthly basis.  I would never wish death on my husband, I love him with all my heart, but I can understand his decision to live the rest of his life without treatments and Doctor visits. We have briefly discussed hospice care in the past and he was never for it. To him it meant he was giving up. But the other day he came to me and said he was considering hospice care. I suggested that we wait until his next scan appointment and see where the cancer is going. We can both have a talk with his Oncologist and decide then if hospice would be the right thing to do and if so when should it be started. Robert could live without treatments for another year. Hospice is usually only a 6 month long care. In my honest opinion, from what I have seen in the last 9 months of his declining health, 1 year seems out of reach. He has already been off treatments since February. Hopefully I am wrong, I am not a Doctor. I am only going by what I see on a daily basis.