It’s been many months since I wrote here, and our lives have changed radically. How we have coped and are coping is what I will talk about here.
My beloved husband was diagnosed with stage 4 inoperable lung cancer in July.
At this point he is okay and not okay.
It started with pain in his back and under his right shoulder. I thought he was straining himself because of holding my arm when we went for daily walks. But the pain got worse and worse and one day on our walk he had to lean against a building because the pain was that bad. He made an appointment with a pulmonologist who ordered a CT scan of his chest and torso. There is was. Cancer in his lung had spread to his upper spine and lymph node and to an area of bone near his hip. He immediately had the scans sent to Memorial Sloan Kettering Cancer Center, where the first doctor he saw was the surgeon who told him it was inoperable because it had metasticized. He was referred to a young oncologist for treatment. The pain he was experiencing was excruciating. He was taking Extra strength Tylenol, then moved onto Oxicodone. Heavy duty drugs to kill the pain were not enough. Night after night he suffered waking with pain. Then the oncologist sent him to a radiologist. He had 3 courses of radiation which is palliative care. After he suffered through the radiation burn, horrible burning sensation in his chest, days went by and the pain subsided and at this point he says he has no pain. The oncolologist tested him for any genes that would enable him to be put on immunotherapy. It turned out he has a gene mutation that made him eligible for a gene therapy called Tagrisso. This drug has demonstrated that it significantly delays cancer progression, and is associated with fewer side effects than standard chemotherapy.
Waves of terror run through me. My beloved. My husband. We have been married almost 44 years. We’ve been through the highest highs and the lowest lows. But this is sheer terror that I must fight every day. He is well enough to go for daily walks, but wasn’t able to keep up an exercise program that the tele-health doctor recommended. There is fatigue. He needs to rest several times a day. He has to pace himself.
We have gone through the prayers, the hope, the negotiating with G-d. Please take me first I have prayed, and continue to pray every day.
This is a very complicated and tragic situation. He is my caregiver, the one who does everything for both of us. Now he is his own caregiver too. Beyond unfair. No one deserves to go through much turmoil.
Makes me think of the end of the movie Unforgiven which my husband loved to watch repeatedly years ago. Gene Hackman who plays Little Bill, says “I don’t deserve to die like this” to Clint Eastwood who plays William Money and is about to kill him. William Money then says to Little Bill, “Deserves got nothing to do with it”.
But this isn’t a movie, and we can’t pretend.
The disease has affected my balance severely and the simple act of walking is much slowed down as I weave around this house. I often have to hold onto the furniture and walls when I walk around. As before, I sit a lot. I need help getting started and my husband helps me to get out of bed and accompanies me down the stairs. I still push myself to shower and wash my hair, and do the routine I call, “dress, groom, teeth, hair, makeup”. More and more I look like a demented lady. I no longer recognize the face that stares back from the mirror, but I know it’s me. I dress myself from the clothes I put on a hanger every night before I go to bed. I end up sleeping on the couch with the ear buds in my ears attached to the TV remote control. fall asleep with the TV on mid series. I finished watching the entirety of The Crown. Often I go upstairs to sleep again for a few hours in the morning. I do sleep, but the sleep is broken. Sometimes my sleep is so clotted with dreams I wonder if I am watching TV or asleep.
What I am doing is trying to distract myself from the waves of panic. Fear.
I am not a good candidate for assisted living, or a memory care facility or a nursing home. I am not a contented dementia patient. I do babble incoherently a good deal of the time (I read that this is damage to my brain stem) but I am still conversational and can listen, speak and comprehend. I can function here. If you witnessed my “functioning” you would call it crazy. The reams of paper towels I use to dry the few dishes I use. Having to put my towels on the bathroom floor ready for me after I shower. The endless narration when do things which means I talk to myself out loud. The need to put the coffee cup I use in exactly the same place when I put it away. The same with my clothes.
I still know how to find the links to the zoom chats I go on – Dementia Action Alliance, Jill Goldman’s Alzheimer’s support group, my therapist Pamela, my friend Jackie Pinkowitz the chair of DAI, my friend Tim and Harry Urban’s support group. I can Facetime with my friends Jeanne and Razel. I so look forward to the visits from my niece Caarin, who has begun to reteach me how to knit. Besides the expense of a decent facility is over $10,000. a month. AND I never want to be hand fed if I can’t feed myself, I don’t want to be showered by aides. NO! I’m in the moderate stage of Alzheimer’s. I don’t go out alone anymore, I can’t prepare meals or go food shopping. I don’t function well outside this house, and my husband is usually here. But now he has cancer and I am terrified.
I wanted to die at home and that was my plan. I thought my dear husband would have many years to live beyond me. I am still praying for that. Quiet on the outside but frantically praying something takes me before him.
My daughter has told me that she won’t be my caregiver. My son now has four children under the age of five. His wife gave birth at the end of August. One will be five in November, and the twins will be two in a few days. This is a situation with no solution.
My body has gotten a lot weaker but so has my beloved’s body. He has to pace himself now. He has to rest a few times a day, take a little nap between the many things he still does. He takes care of our house, goes food shopping and prepares our meals. He is handy and has been fixing the floor tiles in the upstairs bathroom in order to reinstall the toilet properly that was leaking. He has been on unemployment since March when his company furloughed most of their employees due to the Covid virus. Now he has applied for Social Security. He used to say he would work until he was 70. He’ll be 67 in a few days. My Libra love. We are heartbroken together, but he still makes me laugh. A few weeks ago he cried out to me “I can’t take your relentless self pity!!!”. But then he turned that into a decree and wrote on a card that he folded and placed where I write my daily list – “NO RSP”
No relentless self pity.