Today was one of those surreal days that you’re not really sure happened. It was fuzzy around the edges with harsh hard moments and little soft ones thrown in. But, today did happen. It happened, and we have to figure out how to move forward. Move forward with hope, because that is what we are promised.
This hope we have as an anchor of the soul, a hope both sure and steadfast” ~Hebrews 6:29
Find peace, because that is what was given to us.
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. ~ John 14:27
On Thursday morning the doctor used an ultrasound to identify and locate fluid that had accumulated around Kevin’s right lung, liver and spleen. They found a good bit around his lung, however when they moved to the abdomen, they found no fluid. Kevin’s distended belly is being caused by an enlarged liver and spleen, not an accumulation of fluids as we had thought. They went ahead with the fluid removal around his lung and he was able to get a good bit of relief right away. His shortness of breath improved and he seemed to rest easier. However, when we got the labs back that day, his bilirubin levels continued to rise. Kevin’s cognitive abilities continued to be affected by the liver levels so the doctor ordered a drug that is designed to help the body rid itself of those toxins. It’s hard to tell if it has worked.
Rachel went into research mode to see if there were any other options to help his liver improve, but after many phone calls, emails, a few consultations and a lot of conversations, none of those options make sense for Kevin.
That night one of Kevin’s closest friends, Ian, spent the night with him in the hospital. My hope was that, given how much time Kevin had spent awake Thursday that he would sleep well that night. Unfortunately he did not. Kevin experienced another night of discomfort, frustration and mild confusion – but at least he had his best buddy there to see him through.
I spent the evening at Kevin’s cousin Claudia’s house who lives close to the hospital. She kindly made me dinner and a poured me glass of wine. I helped her decorate her Christmas tree and she and I shared the evening with her dog Jack and sweet kitty, Bob. In the morning her kind husband, Larry, drove me back to the hospital at 6:00 am to relieve Ian so he could go to work.
I spent the morning with Kevin, asking the doctors about pain meds, ordering food and attempting to get him to eat, calling the care team to help him with tasks like turning in the bed, going to the restroom, etc. I could tell he wasn’t feeling better. His pain level seemed to have increased and his awareness level decreased. His shortness of breath had returned, as a result of his diaphragm being raised by his enlarged organs. And he wanted out. He asked the nurse and I several times when he would discharged. A physical therapist arrived and helped Kevin realize just how strong he really is – which honestly impressed us both. He has a strong body and a strong will. (Told ya, that man is a BEAST!)
Rachel spent the morning meeting up with Kevin’s cousins who had come into town and then headed to the hospital as soon as they got off the plane. She was making phone calls to doctors and continuing to gather as much data as possible to make the decisions regarding the next steps in Kevin’s care.
The decision she has come to, for now, barring new information tomorrow, is to bring Kevin home to their sweet little rental house with hospice coming in to help. He will continue his IV antibiotics as well as his current cancer drug debrafinib. In addition they will add back the MEK inhibitor. These are the only two drugs that Kevin’s liver can tolerate and therefore have a chance of reducing his tumors and possibly the burden on his liver. When Rachel described this to me she said, “I’d like to say that I have an ace left up my sleeve, but really it’s a two of clubs. Not much, but hey, it’s a two of clubs.”
Now, at the end of the day, as Rachel arrived home and the cousins said good bye. She and I briefly processed what was happening. She was so tired, she didn’t have the energy to talk, and she really didn’t want me to talk either. So we hugged and cried instead. It is moments like these that this is all so hard to absorb let alone understand.
She cried, “Where is our miracle?! You know! I mean, aren’t you thinking that?” I replied “I’d kinda hoped I’d be it. That I’d come out here and you and I were convinced we could help him get better. I even said on Monday morning that I was really convinced he can DO this – he’s fine. But by Monday afternoon – he wasn’t. I feel like somehow I failed you, or him.” She said, “Sarah, if you were in that conversation with the oncologist and I today, you wouldn’t feel that way. We did everything we could.”
And there it was. A wife making some of the hardest decisions of her life, extending me grace. On what might be one of her darkest evenings, when I selfishly poured out my feelings of guilt and whiny inadequacies to her, she simply gave me grace. I got her a glass of water and left her to sleep. She had done everything she could to pour out herself – mind, body and soul – for her love for years. She would continue to. And she was exhausted, but she gave me grace.
Tomorrow we will work out details and hopefully Kevin will come home. Tomorrow we will continue to wait. And hope.
But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me.