Island Life

Jenny here.

January 6, 2014. Today is the 7th anniversary of my dad's death. I miss him more every year but I've also felt him closer in the last few months as I transition from being just a wife into also being a caregiver. My dad struggled with his health and was disabled most of my life.  Life as we know it right now was my biggest fear come true yet, somehow, he prepared me for it. I'm not sure I'd be standing upright these days if I didn't have the example of tenacity and joy that he had through it all. It makes this anniversary a little more tender and difficult.  It's also the first anniversary I've faced after my other grandpa passed away. It's made me feel like I'm running low on important men in my life.

Wil has been at his SNF a little over a week now. Lately I feel bottomed out.  While Wil was at the hospital, each day was filled with labs, tons of services, and support. Have I mentioned I love UTSW?  It had become like an extended family, crossing paths with familiar staff and other patients.  Our whole focus was on getting Wil well and even as he had adverse reactions, people were hopeful. Then we moved to the SNF...Where it feels like people go to die. In my head I know Wil is still fighting and the SNF is temporary. But many of the other residents are not, and it's depressing.

It's hard to admit that I hate visiting him there, but I do. I still go every day. I want to see him. Every day I end up being glad I went. Yet I dread seeing him there. It's just out of this world unbelievable to me that this is my husband. I have such a strong point of reference as to the wonderful human being he has always been.  At times, though, I am challenged to see the man I married. He's in there somewhere.  He just looks like a patient more than a partner. I just miss him so much and the little things you take for granted (and that tear you apart at times). I miss being able to have a conversation with him about anything or nothing, because now I talk and he tries to respond but often it takes 5 tries to sort of get what he means.  I miss having him hug me back, kiss me back, smile.  I miss texts throughout the day and having someone always check that I made it to my destination or waiting for me at home. I even miss him droning on about math and math related jokes. I know we are both lonely a lot and I know he worries about me. He says "this is hard for you."  Its funny how keen he is at nonverbal cues now that talking is hard.

I was trying to explain this new phase of the journey to a friend yesterday. How can a journey you are on together be so lonely?  It was something I didn't expect. I knew I would be taking on a big, new role. I knew it would be hard.   But unlike any other challenge we've faced together, this time around we have such different, distinct roles. We have the same goal--his recovery--but our roads couldn't be more different. It's a strange feeling to want the same thing but be on two separate islands struggling to get there. In other hard times we could help each other or even share tasks, talk it through. Now much of what I need to do on my end, I have to do alone. He can't help, even if he wanted to. His therapy and recovery I can't do for him. We both have the task at coming to terms with our new life, however, at this point we don't have a way to talk about it equally. I'm rambling through an explanation here that I'm not sure I can adequately capture. It's just a strange feeling.

But just as I felt like I was free falling, things have started to look up in the last two days.  A supply drop to my island, just in time.

Wil is making progress on eating. He's been upgraded to ground food and it looks much more appealing.  He is up to about 12+ bites per meal plus his nutrition shake. Last week was 3-4 bites. He has a little more energy and is awake more.  For weeks he could barely keep his eyes open, now he sometimes looks right at me and is more social with visitors.  Yesterday we saw a partial smile...the first in weeks.  I think his sleep cycle is starting to return to normal too.

In terms of motor work, it's a slow process. He is progressing, but he's lost so much muscle tone this past month. And again, due to his size, no one other than the motor therapists are going to from give him an opportunity to be out of bed. For now he is supposed to be doing some exercises in bed, sitting on the edge of the bed to eat, etc. He sweats like crazy because it's all hard work. Combine the eating with sitting upright and you have a full body workout these days.

Today was his first outpatient follow up appointment  at the cancer center with his oncology team. It was an adventure. Wil was transported via ambulance in his wheelchair at 12:30pm. We arrived at 1:00pm and checked in. Apparently, afternoons are busy there and our appointment had been booked wrong so labs were not drawn until 2:30. Mind you, Wil has not sat up straight for more than 30 min at a time for over a month. As he started to sweat and look pale I got worried and pushed for them to speed things up. Unlike other folks there, I'm guessing he was the only one coming from a facility. Everyone else was ambulatory and verbal, able to sign forms and drink coffee while they waited. His O2 had dropped significantly in the waiting time and they treated him with oxygen. We made a new plan for how to safely transport him for next time and getting him to the back to lay down to avoid this again.

All of it was worth the anxiety when we spoke with his oncologist's PA.  His labs look great!  His bilirubin, which had been 15 at the worst (normal is .8) is now at 5.4. We are making headway on that liver recovery!  I pray it's back to normal in the coming weeks. Then we will be able to get back to the real fight...getting rid of that cancer. His only assignment between now and Friday at the next follow up is to get hydrated. He's not been drinking enough.

So little has gone as expected.  I told the PA that the hardest parts are the unexpected. He looked at me and said "None of his treatment has gone as we expected. We are all frustrated with you."  And they are committed to getting him back to chemo ASAP. It's just a waiting game. It's likely he will be readmitted to UTSW when it starts again. I am hoping he does...so he can be out of that SNF and back with our support crew.

Little by little, we're gonna do this...