Everyone who comes in contact with me (and that includes the interweb folk) in the next month is going to get tired of this coming out of my mouth: “One year ago today…” Just to warn you.
One year ago today, Stephen saw his Oncologist for the last time in the office. We went in because of general fatigue and weakness and lower back pain. Oh, and feeling like he had to pee all the time. In hindsight (and it took less than four days from that appointment to figure it out) everything had an answer and it was all tied to the same thing. He had tumors growing on the nerves in his spinal column. The tumors started low which was where the backache was and were less dense as they went up. Of course we didn’t find that out until later.
The Oncologist did an exam and asked him some questions about his day to day life. He gave him a Percocet script for the back pain. He explained that he had just done 5 rounds of the hardest Chemo regimen plus the 10 days of radiation. Fatigue was to be expected. Weakness was to be expected. But his blood numbers were okay. And he had okay range of motion in his legs. Rest. Eat well. Put in an order for some rehab therapy and also ordered an MRI for his lungs and back. This was a Wednesday.
By Saturday morning, he wasn’t really able to get out of bed without falling. He had some therapy on Friday but wasn’t able to get up or down the stairs at our house. He couldn’t pee. Felt like he had to but couldn’t do it once he got there. After my shower on Saturday, he calls me into our room and has me look at his belly. It was huge and hard. Turns out it was his bladder. I called to have the girls picked up and took him to the ER. They put in a catheter and drained a gallon of pee (I wish I was kidding) from him. The MRI scheduled for Monday got moved up. I called his dad. I called my doctor and upped the xanax and got started on the Lexapro. I couldn’t function.
That’s when they found the tumors on his spine. That’s when they transferred him to Mayo.
And that’s when I knew he’d never come home. I just knew it. I knew it but I didn’t know he was fixing to die. I just knew that our home wouldn’t be accessible as it was. I knew that I was not able to fully care for him and the girls too. I didn’t want our home to be filled with medical equipment. I didn’t want Ella to remember that. I, personally, didn’t want that. Not that I didn’t want to care for him. I just knew my limits.
There’s an important lesson in learning one’s limits. You think you know where it is. And then it gets pushed further and further out. How did I do that? I thought my limit was having a sick baby; burying a son. But no. More was asked of me. So I did it. I did it until I just couldn’t. I had to stop. I didn’t mind hanging out in a hospital room in Rochester all day. I really didn’t. The time was spent between therapies and radiation and ordering room service (no kidding…every room, every meal) and playing cards and reading. Not a bad gig. Kind of a vacation from the rest of the summer. Not to take it lightly but it wasn’t so bad. But the whole planning to take him home? I couldn’t do it. I couldn’t make myself even think about it. I remember telling a social worker (out of earshot of everyone else) “I can’t take him home…not like this.” She said that she understood and was working with our insurance company.
Who says that? Who even thinks that? I know that’s all he wanted and I couldn’t do it. I couldn’t bring him home. And I said it outloud.
I hope that he knew that I didn’t love him any less. I hope he knew that I had just reached my limit. That I had done all I could do with what I was given. Or handed. Or, well, cursed with. Because that’s how it felt. Feels. Whatever.
And I’m left wondering, still, one year later. Could I have gone further?