It’s been a week since starting with Hospice. I’m glad to have made the choice when I did. Physically, my body has most definitely begun a new chapter in this story, and placing myself in the hands of pain management specialists is turning out to be a good place to rest.
Abdominal and chest pain, loss of appetite, digestion problems, and more have become quite the issues lately, pretty much increasing steadily. I’ve been placed on 24 hour morphine with time release pills (150mg/day), and also with faster acting hits when needed. One of the most difficult side effects of pain meds at this level (combined with pancreatic failure due to the cancer) is the ability to process foods. The past few days we’ve tweaked meds to try and manage that better, but honestly, that is an area still in need of much prayer as the doctors and nurses try to find a mix that works best for me. Still working on that. Due to the mix of issues, I’ve also signed off to refuse any future feeding tubes. I mean really, will any bottled supplement ever compete with Christy’s culinary skills? I think not.
Other side effects… well… I can no longer drive. I’ve been told it just isn’t safe while at this level of sedation. I’m also much more drowsy than I’ve been before and it’s amazing how easy it is to drift from reality to dream-land in just a few moments when the eyes close. There are times here and there when telling the difference between the two is quite the challenge. I suppose I should just take advantage of this strange blur of thoughts & realities and write a movie script or two!! One of them might be a big hit in the psycho-drama genre! I’ve also experienced a few panic episodes recently, probably due to those blurred lines. This has all been a bit odd.
I do have an amazing team of people at Hospice and at home, however, guiding me through these changes, holding my hand each step along the way, and slowly but kindly reminding me that more changes will come. I know they’re watching out for my emotional well-being and that of my family for a journey I’ve spent the last year preparing for. And the lead nurse reminded me in the most gracious and light-hearted way yesterday, that she has far more medication in her little bag than I could ever muster up in pain. It was her way of encouraging me not to be anxious about anything but to focus on life instead. Nurse Kelley is the best!
Speaking of preparing… What a blessing these past ten months have been. We owe God a mountain of gratitude. There are so many others who get diagnosed with the same late-stage pancreatic cancer who had so little time to complete their lives. For me, not only have I been able to maintain a satisfying degree of physical health between chemo cycles, but this has also been an amazing year of healing and restoration emotionally and spiritually. This has been time I really needed to right some wrongs, get old “To-Do’s” crossed off the list, and set my life in order. I think the old “bucket list” is done. Might be time to make a new one to fill the time still at hand!
And even though we’ve moved on from oncological treatments, I want to recognize Dr. Anna and her oncology team at VITA Medical. I do believe that without their help and care, things could have been much worse for me. For a small town clinic, it has always been amazing how right on they’ve been when I’ve sought second opinions from much larger cancer care centers in Boston and Philly. Their care is among the highest available in the medical community and they were always pleasant to work with.
So where does all this leave me? Honestly, I’m not sure yet, but am fully determined to make each day, each week… however long I have… count for something meaningful in God’s sight. Here’s what I’ve learned from the past and what I’ll be focusing on in the days to come.
- I confess that since leaving our years of active ministry, my closeness to God has been spotty. Never lost my core faith, but I feel more like the woman clutching to the hem of the Lord’s garment than John who leaned on Jesus’ chest at the last supper. I know clutching still counts, but closeness is better and that’s where I long to return to. Bible reading, prayer, fellowship, reconciliation… these things are all important. And church… well, it’s like family. None are perfect. But living without either is just plain miserable in the end. Community is about staying connected and contributing what you can to the whole. No more excuses that it doesn’t work out. You’re a part of it, so help make it work out. Right? We can all do that in our immediate (or “birth”) family and spiritual family.
- I believe the last ten years have had some difficult moments with my children. I mean really, there was a year back a ways when all four of them were teenagers. O.M.G. was that time hard. Now they’re all in their 20’s and things are so much better. For any parents of teens, please let me encourage you to learn from my misses. Love them first, fix them last. Pretty simple. With the time I have left, I choose to focus on love. And thank you kids, for being understanding and patient with me all those years!
- In marriage, there just ain’t nuttin’ worth living in discord. The Bible says to esteem others higher than yourself. Showing respect, finding understanding, making sacrifices for the other… This is what makes marriage work. I am so blessed that I can say after nearly 30 years of wedlock, marrying Christy was the best thing to ever happen. She is my angel. My prayer now is that I can communicate that 1000 ways every day!
- At the end of today’s list, I am also setting a goal to find as many ways as possible to do activities which focus my mind on life and not looming death. Been struggling with that, but I know it needs to be done. So hanging out with visitors, getting out to do things that CAN be done within my new physical limits, playing piano or working on art, reading… etc. Just looking for things that help my mind focus on good. That’s what’s important.
This is certainly a difficult time for so many of us. Let’s make an agreement to walk through it together with God’s help. So I’m here for you, and it is comforting to know that you’ll be there for me and my family. Maybe, with faith, we can keep things going for a very long time to come!