This week has been a very hard week emotionally for my husband and I. The skin pain and itching from his cutaneous lymphoma seem to be increasing intensity. We have been trying to figure out what pain medication will give him the most relief without making him a zombie or worse than this, not able to get up at all. One medication will pretty much knock him out and results in uncomfortable side effects. Another seems to relieve the pain to a manageable level so he can still get around, but doesn’t last long enough and taking too much in one day can cause liver damage. Beyond all of this, it’s the itching that is the most unbearable. This has him so depressed and desperate, even scratching until his tender skin bleeds doesn’t give him relief. We saw a pain management doctor today. We are hopeful that she will be able to coordinate his pain and coping meds to give him some quality of life.
It is not easy to see the love of your life, strong and tall, reduced to a frightened, weepy, pain filled creature, depressed and withdrawn. I want to take away everything that is uncomfortable for him, but am helpless to do so. All I can do is be there and hold his hand or rub his back. I try to be strong and do the things that need to be done that he cannot do. I release my tears of grief and sorrow in quiet when I am alone. I guess I have always been the strong one of my family. My family counts on me to be there and functioning. Even I am realizing my limitations.
I have spoken with my boss to ask permission to reduce my hours to be at home more with W. I also need to conserve my mental and physical energy to work out all the disability paperwork, doctors appointments, medications and daily care for my husband. I am grateful my boss is graciously understanding in allowing me the flexibility to work as I can and take care of W. I didn’t think this talk would happen so soon. We were told, perhaps optimistically, that people with this kind of lymphoma could live a normal lifespan with treatment, but there is no cure. Perhaps it sounded to good to be true. No one said the quality of life would be so compromised. I should have taken the cue from the dermatologist, who first suspected the condition, that this lymphoma was not so pleasant. However, even with this realization, what is one to do to prepare for such a life ahead? No, perhaps it’s better to undergo some denial in the beginning and learn to cope gradually.
I am grateful and appreciate so much the little kindnesses people in our lives have done for us. Being a recipient of such kindness and compassion reminds me not to be so self-centered in my own problems. I count my blessings and know that there are others still worse off that us. God has truly answered my prayers and taken care of our financial needs to keep us going. It has allowed me to return some of his generosity to others as well. What is it called? Paying it forward? Thank you all for loving us.
That reminds me, I have to finish knitting Scott’s socks tonight!
Matthew 25:40 Jesus said “ I tell you the truth, whatever you did for the least of these brothers of mine, you did for me.”