A day in the life…..looking back

A subject came up today that brought me back to a day just a few weeks after Tim’s diagnosis. I have not been able to get it off my mind since. Tim was dx’ed with strep sepsis, a VERY dangerous illness, and spent about a week in the hospital, most of that in intensive care. This was what led to his MM diagnosis. After he came out, and we had our first devastating appointment with an MM specialist, he was put on what’s called “pulse Dex”. We were in the process of getting Revlimid squared away financially, but it was 40 mg. of dex, 4 days on, 4 days off, with other prophelactic meds to ward off infections (which didn’t work, in this case). It is a brutal protocol and not used much now, as a clinical trial that broke just a month after this, in 2007, showed the mortality rate was much higher than lower dosing of Dex and that the lower dose still worked well enough. Tim was in the midst of this for the 1st month before his doctor lowered the dose, and suffering the side effects, when his nephew, Danny, (his Godson too) was making Eagle Scout and there was a ceremony and party for him. I did not want to go. For one thing, Tim woke up feeling horrible. For another, I was still dealing with unbearable grief over the diagnosis and unable to control the tears. Being in a crowd who all knew and would talk about it was too much for me. I felt like our family was just cleaved from the rest of society now, as we were living in this nightmare world, being sucked into a vortex of pain and fear. Everyone else was going on with their normal lives. Add to that, we were barely speaking to his sister-in-law, who is as toxic as they come, and this was just not a scene I wanted the 3 of us to be in right then. Tim was resolute, wanted to be there for Danny. So, we leave. Within 10 minutes or so of leaving our house, I am pulled over by a cop. I am ready to blow. I am so upset that Tim is making us go and now look, I am pulled over. I saw a cop taking radar on the other side of the highway at the bottom of a hill, which I think is just unfair as you can’t help but pick up speed unless you ride the brakes. I flashed my lights up further to warn cars (OK so maybe this isn’t right) and I guess the “pick-up” car saw me and pulled me over. I was not speeding, it just ticked him off to see me flash my headlights. He takes my paperwork and goes to check my license. Tim is in the passenger seat, feeling awful, and I am thinking, WE SHOULD NOT BE GOING TO THIS THING, THIS IS A SIGN. I do something I know you’re not supposed to do, but I am thinking, we may lose everything, financially, and now my insurance might go up. I get out of my car and walk back to the cop. I say, “just so you know, my husband, who you saw in the passenger seat, was just diagnosed with cancer 2 weeks ago. Right now, it looks like we might lose our business and our house. So, if you still want to write me a ticket for flashing my lights, go ahead.” I walk back to my car. He decides not to write me up, and I see him take a look at Tim as he hands me back my stuff. We go to the party. I am deep breathing all day trying not to cry. They show a picture show of Dan from the beginning of his boy scout career to the present time, and Tim and I are both crying, thinking that he will not be here to witness these milestones with Olivia and how effing unfair that is. Tim is feeling worse. Has the shakes. Says he wants to leave and go to his brother’s house. I say, “please, let’s go home” but he says “no. Maybe I’ll feel better just relaxing back there”. Mind you, his brother and sister-in-law would never go out of their way for anyone, certainly not our kid, but Tim and I try to do what’s right in our heart, despite others doing awful things to us. This time though, I thought we were going too far and sacrificing too much. We go back to their house. He gets worse and worse but tries to hold out. I am upset. Finally, he agrees it’s time to go. We make the 45 minute drive home. He looks so bad and is now feeling warm, so I stick a thermometer in his mouth. 103. Call the docs and, yup, we have to go to the ER. I have to call a neighbor and ask if Liv can come over and possibly stay the night. She says, “of course”. My kid is starved, didn’t eat any of the party food. I ask Julie if she could just please give her a bowl of cereal or something. But, this is the part that broke my heart. I try to calmly tell Liv that I have to bring daddy to the hospital. Her face collapses and the tears form. Within about 2 or 3 seconds, she stops herself, takes a deep breath and says, “NO, I have to be brave.” I just wanted to die. She doesn’t want to cry in front of our neighbors. She is trying to be strong for her daddy. 8 year old little girls are not supposed to be brave for adults. They are not supposed to have daddies with cancer who go to the hospital. They are not supposed to suck back their tears and tough it out. I was so incredibly sad I wanted to cry, but I am being strong for her, and Tim. I am so dang mad, I wanna punch someone. This scene flashed into my head today when I was talking to someone about being pulled over by cops. It’s hard to recall days like that. It’ even harder to know there might be worse ones coming. Living in the moment is the biggest challenge for someone like me. It’s all at once impossible and necessary. So many worries creep in. But, so much joy can be robbed by letting them. So, we are still trying to make good memories for ourselves and Olivia. But, many times, I just wish there was a “delete” button on our brains where we can wipe out these heartbreaking ones. A little while ago, I thought to myself that, at least, Olivia probably has no memory of that day. I just wish I didn’t either. For now, I am grateful for the fact that Tim has indeed seen many of those milestones we thought he would not see. And I sure hope he sees a heckuva lot more too.