I’ve been in a bit of a design slump lately, and then to top it off, I managed to get my annual hit
It’s been a while since I updated everyone on Seth’s progress and I’m afraid that the news is not what we wanted it to be. After over a dozen treatments between FolFox and FolFiri, we had a new set of scans done and the prognosis is grim. After hitting Seth with the hardest things in the arsenal, the cancer is persisting, growing as well as creating new tumors in his lung, his liver again and now his hip bone. We took a break from Chemo, giving Seth some much deserved time to recuperate after over 7 months of torture and we left that meeting with the assumption that the new oral chemo pills they mentioned would be the new solution and if not, we could get in on a study they were looking into. After much research, it was obvious to me that the oral chemo would do nothing more than buy him a little more time, and not necessarily quality time, but maybe it would give him a little more time to get his blood counts where they needed to be to get on a trial. We left still mostly optimistic that we were still on track with shrinking the tumors, surgery to remove the rest, and then cancer-free on the other side. It would be a tough road, but we’d get through it together.
When I brought my fears about the oral chemo being the equivalent to a time-buyer to Julie (our always incredible contact at FCS) she agreed that they weren’t much more than that. I expressed frustration, telling her that the only point of Seth being completely miserable these last few months was because we planned to be without cancer when it was all over. She cried and hugged me and told me she was so sorry, but Seth would always have cancer. We’d never be free of it, and at this stage they were just trying to give us as much time as they could. I was heartbroken and worse, this new information raised so many more questions about how to proceed.
Through all of this the most important thing to me was to keep Seth’s spirits high and battle-mode intact, so I internalized everything that wasn’t necessary for him to know, even having private consults with the Oncologist so that I could have my questions answered as frankly as possible and to keep Seth positive and hopeful. So much of this has been a mental battle as much as a physical one. Dr. Weaver explained that on the outside he might have a few months given his state currently, but that with cancer it was anyone’s guess. I figured we’d just stay the course. Take the pills, try to get Seth’s hemoglobin counts back up, try to get him in a healthier place and get him on the Immunotherapy trial.
I thought we’d work toward that goal, but what was potentially a few months we might have left together started to deteriorate as he did. The very next day we found out that his kidneys were failing, his creatinine was skyrocketing even after a stent replacement and permanent catheter. We needed to make some hard decisions, number one being upfront with Seth about the fact that he’d never be cancer-free and that in the end it would get him, so that this previous assumption of being free of cancer didn’t influence him going forward.
How do you tell your husband that he’s going to die, no matter what we do?
There were discussions of surgery and dialysis, but our team thought that Seth was too frail for either and I didn’t want Seth’s last days to be filled with more pain than he’s already had to cope with unless it was what he wanted for himself. I think it’s now agreed that he doesn’t want that. He deserves to be free of pain. He’s endured too much already. I can’t be selfish in this. I have to think only of him and what he needs. This isn’t about me or anyone else. It’s about Seth. My sweet, clever Seth.
That brings us to date and the end of a whirlwind month. Under the advisement of our team we’ve set up a consult with Hospice tomorrow. We’ve let Seth’s family know the newest details and we’ve gotten Seth a wheelchair to make his mobility a little easier.
We have one last test on the creatinine tomorrow, which we’ll get the results of Thursday and that will tell us more about how much time we have left with him. For right now, my priority is to give Seth as many moments as I can. He mentioned wanting to go back to Disney a couple weeks ago, so we’re working to make that happen. If his creatinine levels improve this week, we might have a little time, but if not, they said he’ll just sleep more and more until the end as his kidneys shut down.
I’m living my worst nightmare, a new devastation every minute as I think of all the things I’ll miss when he’s gone. I know it’s a blessing that we have this time, not everyone knows when their clock will run out, and I’m taking full advantage of every minute, but it doesn’t take away the heartache. I keep going because my life revolves around making him as happy and comfortable as possible. I don’t have time to lose myself to grief, but once my whole reason for living is gone…. I worry about what happens when his suffering is finally over but mine really only just begins.