Wednesday, October 4, 2017

The Mysterious Box


Day 8 of hospice care. Still no symptoms.

We had appointments with two members of our Hospice team yesterday; my new nurse and our social worker. Both appointments were very informative and enjoyable. I'm starting to like my new team.

I should have said up front in Welcome To Hospice that too many people think hospice means you're on your death bed. That's the image we have in our heads, but it's not the reality most of the time. Most people do hospice at home. All hospice means is you're no longer treating your disease. Instead, you're focusing on quality of life.

Both ladies started by telling a bit about themselves, which I appreciated. I don't think I've ever had a medical professional begin that way with me before. The whole idea is build relationships and make sure everyone is comfortable with one another. That's one thing that sets Hospice apart, in my limited experience so far. I'm looking forward to building relationships with these people.

My nurse's name is Carolyn. We covered a lot during her visit, most of which I won't bore you with here. She did everything you would expect from a first visit with a nurse, including examine me, take my pulse and blood pressure, and all that good stuff. She asked about how I feel, and if I had any medical needs. Right now, I have everything I need. But what I was waiting for was to open that box in the fridge.

After our meeting last week with the admitting nurse, a couple of additions had been made to our house. First, according to instructions, we placed a magnet on our refrigerator. It has the Hospice phone number on it. This is the first time anything has been affixed to the outside of our refrigerator in the 40 year history of our marriage. My wife is adamant about not sticking things on the refrigerator. But things have changed.


I asked her which was worse, her husband being in hospice care, or having a magnet on the fridge, and she had to think about it. Underneath the magnet is the Do Not Resuscitate form, right where EMT's are trained to look for it. So that's a new addition to our decor.

Then there was the mysterious box in the fridge, with the warning sticker on the outside, pictured at the top. That sticker was the only thing that kept me from tearing it open as soon as it came last week, but I patiently waited for my nurse to arrive, like a good boy. Here's what was inside:


Right there in front is our main attraction, Morphine Sulfate. The party's at our house. Just kidding. It's at your house. But seriously, folks, I hope I don't ever have to open that bottle. It's for what they call "breakthrough pain." I'll stick with the spiritual breakthroughs, thank you very much. The rest of the meds were for various things that hospice patients tend to need at some point. She set up a bi-weekly visit on Tuesday mornings.

My nurse, my wife and I talked for at least an hour about various things. When we went to my office for the examination, she saw the VIP lanyards from concerts I have hanging there, and my collection of Neal Morse posters. She asked about him, and I found out my hospice nurse is a progressive rock fan! So when she comes back in two weeks, we will listen to some Neal Morse!

 

Shortly after Carolyn left, our social worker arrived. Her name is Desiree. Her area of concern is our mental, emotional, and spiritual well being. She talked to my wife at least as much as she talked to me. I assured her that I have a therapist and a pastor, so I don't think I'll need their chaplain or their mental health services. But they have many ways to help my wife, and I'm very grateful for that.

I stressed in both visits that my priority is not comfort, but lucidity, so I can interact with visitors, and continue to write for as long as possible. I don't know if there's anything in that mysterious box that will do that, but she said there are lots of options. Both ladies reiterated how good Denver Hospice is at pain management. I'm counting on it.

At one point, Desiree asked me if I was sad, or depressed, or afraid or something, and I said I'm in a really good place because I have no symptoms, and I have a sense of purpose. I talked about this blog, and how I'm working on turning it into a book. That's my main purpose. To bear witness.

But I also have another purpose. To pass something on to some young musicians I've become attached to, and to help launch one career.

When you have a prognosis like mine, it helps to have goal dates. Dates that you look forward to, and don't want to miss. The next date like that for me is in January, though I'm not sure of the exact day yet. It's the winter show for The Littleton Conservatory Of Rock, where I am the vocal and performance coach. My intention is to be a full participant in that show. But January may be pushing it for me, with symptoms expected by Christmas. So I have to teach all of my parts to someone else, so they can cover them if I can't. But just having that date to shoot for helps my sense of purpose. It's a box I'm looking forward to opening.

One my greatest joys in working with this group is two of the singers I get to coach. Ally and Payton. I should probably call Ally Alexis, since that's her real name, and nobody can agree on how to spell Ally. Ally has a heart of gold, and voice to match. She and I are similar types of singers. We both have a good ear, are good at singing harmony, blend well with other singers, and have great musical instincts. And we're both in awe of Payton.

You may have seen me refer to a young singer I call my protege. That's Payton. I haven't used her name until now because she's been underage. But she turns eighteen tomorrow. Then I'll be able to use her full name, and I'll have trouble shutting up about her. Not that I'll try. Payton is one of those once-in-a-generation type singers. Watch out for her in the next few years.

I had coffee with these two delightful girls yesterday to celebrate Payton's birthday. Payton's mom Marni was there, and took this picture of us.


Ally's on the left, and Payton's on the right. Our time today was about celebrating Payton's birthday, and about passing something on. I had a mysterious box for someone else to open. I was able to bless her in a way that will hopefully help her get started long after I can't help her in person anymore. Because it's her career I'm supposed to help launch. Helping Payton as much as I can for as long as I can is one of the things I'm supposed to do with the rest of my time here.


I received another blessing yesterday as well. A mysterious box arrived in the mail. I opened it to find a piece of original artwork by Padi Faraji, a friend I've made online through my blog. I think we connected through Fabian Bolin of WarOnCancer.com. Padi was one of my first Twitter followers. She followed me on Twitter before we became Facebook friends. Her comments on my blog have always been very sweet. She is an amazing artist, as you can see. Follow her on Instagram to see more of her beautiful artwork. She sent me this piece all the way from Japan. We have it in the perfect spot in our home. It's indescribable to have friends in all parts of the world who I will never meet face to face, but who still care this much. I'm deeply grateful to you for this, Padi. It means a lot to me.

For me, this was a day of blessing. A day of mysterious boxes, both to give and receive. Yes, I'm meeting with my Hospice team and discussing end-of-life issues. But both meetings were a blessing because of the people. Because of the relationships that were begun. I received a blessing from a friend who lives far away. And my meeting yesterday afternoon was a blessing because of the relationships. But this time, I got to bestow the blessing instead of receiving one. And that's much more fun. When Jesus said it's more blessed to give than to receive, he wasn't making up some new law. He was stating a simple fact. The giver gets the greater blessing than the receiver. I have been blessed, so I must be a blessing. Otherwise, the blessings I receive go to waste.

There are more hospice team members I have yet to meet. I won't need a Nurse's assistant to help me bathe or anything anytime soon, but there is a therapy I expect to start that I'll tell you about when we begin. It's something my friend Amber would call "hippie crap." Only she wouldn't say crap. I am an aging hippie, so I'm looking forward to trying it. Another mysterious box to open.

The rest of my life will be a series of mysterious boxes. I just hope I can give as many as I receive. #waroncancer #bearingwitness

5 comments:

  1. I agree that being in hospice doesn't mean that you're on your deathbed. I've had two friends who were in hospice for over a year. It's great that you have goals, too. It sounds like you're grabbing onto life!

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  2. I think they need to put a PB&J sandwich in that box, it's a comfort food.

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  3. This comment has been removed by a blog administrator.

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  4. Dear Mark
    Thank you for sharing your life and your journey with all of us. I am hospice social worker and love how your are dispelling the myth of hospice. My husband was diagnosed with prostate cancer at the age of 47. Thank God the doctor happen to catch it in a regular exam. He was able to watch it for a while and then eventually he had the surgery. His grandfather had it, his father had it, then he had it. Please God, by the time my 12 yr old son is a man, there will be a cure. Your blog is building awareness. Thank you for that. We have two other things in common. First, I am a singer. Not professional and not professionally trained, but I my voice is the instrument I play (and it comes in a pretty case!) And secondly, I love God too. While I am Jewish, I appreciate your sharing your faith and how you are walking with God on this journey is so inspiring. I will be praying for you and your wife...magnets on the fridge....that is huge :-)

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