As 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.
Kristine said:
Julie, you and John continue to be in my heart and prayers. May John feel nothing but peace and love this week and his memory bank be full. God bless you both. Kristine
Connie Moneta said:
As I read your words, I think of how blessed I’ve been in my life. My children, grandchildren and family are healthy and that’s what most important in this world. The love I feel coming through and from them fills me with gratitude and thankfulness and your words make me stop and realize how very fortunate I’ve been. My thoughts and prayers are with you and John as you continue this journey and may both of you feel peace and love.
Connie
Julie Anne Jones said:
Thanks so much Connie. We’ve certainly learned that our health is the most important thing in the world.
Corlies Rudd Delf said:
You have tremendous courage, Julie, to lay it out so plainly in black and white. You and John impressed us when we first met you as Remarkable People, and boy, have you both earned that title again and again in this long, tough, up-and-down process. We send our love to both of you every day, and right now, our wishes for a rich, satisfying time with your family this Thanksgiving. We know there will be love and laughter and tender moments and tears, and that you will treasure every one.
Andrea said:
Thank you so much for sharing your journey with us. Sending light and love to you and your family.
Sue Clark said:
Love, hugs and memories ❤
dorothy said:
Sending hugs and love from one of those “unknown” supporters who became a friend of Melissa’s through online networking. I hope today is as wonderful as possible.
Gina Latta said:
Happy Thanksgiving to you and your family! Hugs and prayers to you both.
soggystamper said:
I was also praying for that miracle for John. Sorry the immuno therapy didn’t work out for him. Prayers for peace and rest for the both of you. May you be able to celebrate each day you two have left together. Hugs,
Sue
Debbie Fezzuoglio said:
Amazing strength, amazing love, amazing grace. Keeping you all in my prayers.
Julie Anne Jones said:
Thanks Debbie.
Lois R. said:
Julie, this is the first time I’ve been able to follow the link and read all the latest details on John’s cancer journey. Both of you are super strong in mind and heart and it sounds like you’re taking a minute at a time to live life. May God continue to be your strength and comfort. You and John are a blessing to me and thousands of others as you share your triumphs and disappointments. Love and prayers, Lois Rupert
Julie Anne Jones said:
Thanks so much Lois. We appreciate the prayers.
Dina Wild said:
You and John are brave. I continue to pray for your strength and courage, and miracles. Make everyday together special. Always tell one another how much you love each other. Hold hands, share smiles and make memories to smile upon always.
Patty said:
Love to you John and your entire family! Hugs, Patty
Susan Carlson said:
God bless you and your family! I kinda know what you’re going through. My husband was diagnosed with esophageal cancer in August of 2104. He had chemo, surgery, and more chemo. I take every day as the last one I have with him. Prayers for comfort, strength and peace.
Sarah Reitsma said:
You don’t really know me (I’m in your cracking the January code group right now) but I am brought to tears by reading your blog this morning. My dad died from terminal cancer, my sister is fighting it right now. My heart aches for you and the road you are walking. My prayers are with you and your husband. May God bless your days together whatever the number.