John-11-2015As human beings, we measure our lives in milestones. When you’re terminally ill, or you love someone who is, every day becomes a milestone. Because of that, the bigger milestones, the ones healthy people count, like holidays, anniversaries, and birthdays take on even more significance. You begin to count those milestones, to look forward to them, to hope for them. And always lingering in the back of your mind is the question, “Will this be the last.”

Last week John had his first CT scan since August. We did it because he’s going to need a feeding tube in the near future and they had to be sure there were no tumors in his stomach that would create problems with that. Even though we were pretty sure what we’d see when we looked at the scans side by side with his doctor on Monday, we were still secretly hoping there would be some miraculous shrinkage of the tumors (I fantasize about his doctor rubbing his head in confusion and disbelief saying, “It’s the darnedest thing and we can’t explain it, but the tumors are just gone!” A girl can dream).

The results were devastating for me. The tumors have grown significantly. The one on his Pancreas has almost doubled in size and is more involved in the organ now. The tumor that’s causing the fistula between his small intestines and his bladder has also grown significantly, and they can see the ones lining his intestines more clearly because they’re bigger as well. This is only made worse by the fact that he developed a horrible, total-body rash a few weeks ago caused by the Opdivo immunotherapy we were trying, so that treatment (his last available option at present) is now off the table.

I’m watching the toll the cancer is taking on his body. He’s lost over 30 pounds & gets tired very easily. Some days it’s a struggle to eat and he’s not able to keep down what he does manage to take in. We’re having issues keeping his blood pressure up and he’s struggling to stay hydrated so daily IV drips to get him fluids are becoming common place. He also had to have another blood transfusion this week because of the slow internal bleeding caused by the tumors. So next week they’ll be putting in a port to make that easier as well (because his veins tend to collapse and it often takes multiple tries to get a line in when he goes in for his infusions). His joints ache and he’s struggling with edema in his lower legs and ankles.

I’m also watching the toll his cancer is taking on my body. The stress hormone is more powerful than I ever imagined. I’ve gained the 30 pounds he’s lost, have had pretty much a perpetual menstrual cycle for about the past year, am struggling to sleep, and have dark circles and serious bags under my eyes. All of my adult life I’ve looked younger than my age but now, I feel like I’ve aged 10 years virtually overnight. I almost don’t recognize the woman in the mirror looking back at me every morning. It’s a challenge to relax and I’m constantly monitoring his state, asking if he’s okay, and trying not to worry. I work at home every day but am often distracted by his needs, so that drive and determination I’ve always relied on feels more like a curse than a blessing at present.

We are making difficult decisions about what happens after he dies and, with the help of his sister, finalizing the details for things like his headstone and memorial service (John’s determined to get these things completely figured out so I won’t have to deal with them once he’s gone). He says he’s had a great life, has no regrets, and is ready for whatever comes next. He is working on a few small physical legacies to leave his kids and wants to put together a slide show for his service so that’s done as well. It’s an odd thing, he says, to be in the position to be able to make these plans while you’re still living.

Through it all, this amazing man remains cheerful, grateful, and positive. He gets up every day, showers, shaves, and gets dressed. Most days he’s on the couch asleep by noon, but when he feels good, he still works a little or “tinkers” with stuff in the garage. That makes him happy. This Thanksgiving week, as I write this, we are heading to San Jose, California in our motor home with my boys, my mom, and the dogs to spend the holiday with his two kids. This trip was very important to him. He loves road trips and I think wanted this one last adventure to add to his memory bank.

We are blessed by so much and are choosing to focus on the gratitude we feel for today without thinking too much about tomorrow. Among the blessing we’re counting is another day together spent with those we hold most dear and an extended “family” of supporters (both known and unknown) who continue to hold us up in prayer. Thank you. Thank you. Thank you. You make this seemingly impossible journey easier on a daily basis.

As you celebrate Thanksgiving with whomever you love this year, remember to mark that milestone, to treasure it, to hold on to it, and to understand how important it is in the scope of your life, however long that may be.

 

 

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