I am back at work today and hope to be, although not certain, entering a new phase of calm in regard to Jeremy’s health status. He had the trach put in late Friday night but has been in a lot of pain and has been heavily sedated. Overall he appears to be doing well, his blood counts are better and he hasn’t had any new complications recently. The hope is for him to get his trach fitted with a cap soon so that he’ll be able to talk. We believe that once he is able to talk, we can get a better sense of how he is doing mentally and begin working with him physically. As soon as he can start swallowing on his own, the trach can be removed.
I met with his main doctor yesterday and he told me that Jeremy’s lymphoma is in remission for the time being. That in and of itself is miraculous. He said that they haven’t found lymphoma in his spinal fluid yet and that if it is there, it will show itself. They plan to continue to test for it on a regular basis. We are praying it doesn’t appear. The doctor also told me that he had another patient about 10 years ago, very similar to Jeremy in terms of age and life situation, who had similar toxicity issues and is still around and functioning today. He has mild memory issues but nothing too serious. The hardest part right now is that no one knows the full extent of the chemo toxicity and to what extent it is permanent. In that regard, we are still watching and waiting.
I miss Jeremy terribly. Jeremy and I are one flesh and I feel his condition – the impact of the toxicity and his absence from our daily lives – on a level that no one else can fully understand. This is happening to our nuclear family and our children on a level that is incomprehensible to anyone outside of our circle, which can make this all the more difficult and isolating. My kids are increasingly aware of their father’s absence, they haven’t seen him or heard his voice in over six weeks. Our four year old son will do something and then immediately say “This will make my Papa happy, right?”. I try to keep them updated on how their daddy is doing. Our six year old daughter prays for him all the time. Anelise has spent nearly half of her life at our home with Jeremy away at the hospital.
I know this situation is very difficult for everyone who knows and loves Jeremy – his parents and siblings, and even some good friends, are making sacrifices to be at the hospital as much as they can, putting their own lives on hold. I am grateful they can take vacations and get away, they can take breaks and recover, rest when things are too stressful, life is too full. I am grateful for the times they have chosen to go above and beyond to be with Jeremy through the night, sleepless nights for those staying with him. I cannot be with Jeremy as much as I want to be and I’m so glad others can be there and are. But not seeing Jeremy on any given day, not knowing he’s OK, not knowing he knows I’m still there, not giving up on him, is simply not an option for me. He and I are one.
When I am not there, he asks for me – no one else. Whenever he was off the ventilator the nurses tell me he calls for me as soon as I leave his room to grab something to eat, they tell me he says my name in the wee small hours of the night. He isn’t asking for anyone else. I know that and it pains me not to be with him all the time. Now that my mom is back in town and able to be with my kids, I have greater flexibility to do all that I need to do at home with our children, at work and to also be with Jeremy. I am so grateful she is here to give me this priceless gift. I am so grateful that I can be with Jeremy more now that she is here. Since the beginning of this Jeremy and I said that we are Frodo and Sam traveling to Mordor. Neither one of them gets a vacation, check out for a break or anything like that until they both reach their destination… and I’m not planning on taking a break until we reach ours. This is my job, my role and I gladly accept, knowing no one else can be all the things Jeremy needs except for me. But it is hard, lonely and isolating. That is just the reality of this beast. I am eager to talk with Jeremy again, to have more connection to him, to have his companionship again.
I have responsibilities to my children and to my work. I am praying for the ability to do all the things set before me well. I am so thankful for a compassionate and merciful employment situation that has allowed me to be with Jeremy to the extent that I have been able. I am so grateful to friends that have been such sweet blessings to our children. My prayer continues to be that they will sail through this and look back at it as a happy time and that they remain innocently unaware of how scary things really are.
We don’t know what God has planned for us next but we know the road before us is still quite long and intense. We continue to pray, to cry out to God and say, “Dear Lord, may you delight in being glorified through your compassionate mercy on us.’ We need mercy, strength and peace. Thank you for continuing to pray for us all.