So this is the story ….. August 2019
My husband Robert – my heart and soul and love – died on August 20, 2019. I am broken and raw. I will try to summarize the past two years, and what led up to his death from gastric cancer. My chronology may not be exact, but this is how I remember it.
My husband Robert finally retires to New Orleans, so we are together after almost 2 years living apart – me living in New Orleans having opened a business, and he living in Memphis trying to sell our house. We are so excited to be together again. We have plans! Fun plans in our favorite city in the world, New Orleans.
Fall 2016 Robert has a bike accident.
Robert is out riding his bike. Seems a long time gone. I hear him come in. He walks slowly into the living room and says “can you put my bike away for me?” I look down and blood is running down his leg and arm. I aim him toward the bathroom and doctor him up as well as I can – scrapes and bruises. He seems ok, just sore. Next day he can barely walk so off to the after hours clinic we go. He is injured, with a cracked collarbone and bruises and contusions, slight back injury and possible groin sprain. He is bandaged up and sent home to check in with is regular doc the next day.
Doc does xrays and blood tests and sends him home with pain meds. He is on a walker for several days, then a cane. Doc calls – blood test reveals unusually high calcium phosphatase levels. This indicates that something is happening in his bones. His regular internist schedules tests.
November 2016 Sent to Oncologist.
Scans reveal numerous lesions throughout his body. On his femur, ribs, collarbone. Metastatic carcinoma of unknown origin, they say. He comes home and says, “They say I have cancer and I could be dead by Christmas.” We fall to the floor weeping together.
After doc visit,“I’m feeling great; how is it that I have Stage 4 cancer and feel good?” he asks over and over. He decides to go to Peru again in summer for his teaching project, even though in pain in his thigh and back. After a couple weeks in Peru, he realizes his injuries are not getting better and he comes home and schedules another visit with doctor. He begins taking X-Geva shots once a month to build up bone where the cancer is destroying it. That is working. It’s a horse race between the X-Geva and the cancer.
Winter 2016-17 through Summer 2018, More Tests & Scopes, and a Heart Scare.
From summer into fall, R. undergoes scopes in every organ of his body. No cancer is found other than the original lesions on his bones. He rides his bike one morning and feels some tightening in his chest. He has appointment for an EKG anyway, so he decides to drive to Touro Infirmary. In the hospital, the tech is attaching electrodes and suddenly Robert says his chest is hurting and he is going to be sick – the tech witnesses him going into cardiac arrest and pushes the Emergency button. R is surrounded by about 15 docs and nurses, they tell him he is having a heart attack and he tells them to call me. They put in a stint, he stays overnight, and he is fine – just shaken up and confused about what happened. He goes home, takes it easy for a few days.
September 2018 Decision to Close Our Shop.
Caring for Robert and running our shop by myself was beginning to take a toll on my own health, and Robert was getting sicker – we jointly made the decision to close our shop. I am glad we did. It was a painful decision, but the right thing to do.
Finally, another scope of his stomach reveals cancer cells in the lining of the stomach – the origin of his cancer is discovered there. He continues to ride his bike and do normal things – he is extremely tired and has pain in his back and severe acid reflux. Now to formulate a treatment plan – chemo is first line of defense, so he begins his first 8 week round of chemo in October, and he is so ill we don’t think he will make it fully through the 8 weeks, but he does. He loses weight and is extremely tired. He does not enjoy any holidays. He is miserable.
January 2019 and a Reprieve.
He improves after the end of the first series of treatments and regains some of his energy and appetite. We take a cruise to the Yucatan and have a very pleasant and relaxing vacation. He is able to walk around ruins a bit, resting now and then, and eat everything. He naps when he is tired, which is several times each day, and we really enjoy the trip.
February and Decision to Stop Chemo.
Time for his 2nd round of 8 weeks, and he is dreading it. After two weeks he tells the doc he is stopping chemo, as it is making him too sick and weak to enjoy life anymore. His left lung collapses, and fluid builds up. Doc says if he cannot tolerate chemo, then insurance may possibly pay for immunotherapy. He begins immunotherapy drug Keytruda in May – a 1.5 hour infusion every 3 weeks. I drain fluid off the left lung every other day at home, and he goes to Touro about every 2 weeks for right lung drain.
Chemo Destroyed Pleuri and Caused Bleeding Ulcers in Esophagus.
June and July he continues the X-Geva and Keytruda, and only gets weaker and his breathing is labored. He keeps going. He cannot eat without pain, is totally miserable and cannot tolerate food unless it is soft – and even then he eats only a tablespoon or so. He is trying so hard to get better, but he is not. He has a PET Scan and the cancer is stagnant. No new lesions. The keytruda is working. But he is so sick because he cannot take nutrition and cannot breathe. Chemo has destroyed his lungs and his esophagus. There is nothing that will make him comfortable. He has no enjoyment of anything, cannot walk from the sofa to the bathroom without stopping to rest. Cannot ride in car without suffering.
Decision for Hospice Care.
On Wednesday August 14 he said, with difficulty, “I can’t go on like this. I’m ready for Hospice.”
I believe I can heal and move through my grief if I write this story. I will write more about this journey very soon. But for now, I will stop here and let my emotions rest awhile. Here is a link to my husband Robert’s obituary.