To Palliative Care or Not Palliative Care

If you’re breathing, there is more right with you than there is wrong with you, even if you have only one day left to live.

– Jon Kabat-Zinn

 

 

 

 

 

 

I did not qualify for palliative care. But Thursday’s appointment with the palliative care nurse was amazing. He stayed for two hours — nurse Mike, a kind and gentle human..

 

He first open the conversation by saying, “I need to make full disclosure here, palliative care usually steps in when a person has only 1 to 2 years left to live.”  

 

Pausing for a minute and with a curious scrunch on my face, I shook my head and said, “I can’t imagine being alive in two years.”

 

“With a feeding tube you could live 6 to 10 more years.” He paused and stumbled a little bit and said something close to, “10 years might be a stretch.” I laughed.

 

I told him that hospice was my happy place and I’m not afraid of it. I just want to know the facts and not have the medical world skirting the issue. He offered an appreciative sigh and then a chuckle while he nodded in understanding.

 

“The medical world does not like to talk about death.” Mike offered.

 

I had forgotten that fact and was grateful for his reminder. “Yeah. They’re here to make things better, and I get it. But I really would like somebody just to tell me what it looks like while MS devours this body and what the likely timeline is. That would comfort me.” 

 

But I was also feeling an odd and new happy dance that I might get to see my first grandchild, who is due to arrive May 8, when she goes to kindergarten! The picture of seeing that changed everything!

 

Yeup. It’s true.

 

 

 

~

 

I’m going to be a grandma.

 

There are not enough exclamation points or emoji’s to express how big this is for me, having this lovely and mysterious creature – who is beyond description, – bring this baby into our family with Geoff.

 

Welcome to the family, Liz!

 

~

 

 

 

With grandchildren and being involved in their lives, watching my beloved boys (and my beloved extra-kids I will forever hold as family) build their beautiful lives, as visions dancing in my head, I headed into the discussion with Mike with a new light shining in my heart.

 

We discussed the topic of feeding tubes and how I felt about the way my medical team was handling things (or not). When he asked If I would consider making an appointment with my G.I. doctor, I got weepy. I said, “there’s so much emotion in this for me I don’t think I would be clear in my communication with the doctor.  Also, I might not ask the important questions and just go through the process, shaking. For me, that is not okay, and I would not advocate well for myself.”

 

So, nurse Mike gently asked questions that drew out some of the information underlying my tears and then we started a plan.

 

He set up a video chat with a palliative care doctor during our visit. In that video chat, an email to My G.I. doctor was constructed that cc’d my neurologist, urologist and primary care physician (PCP). He asked for a clear path to be set up to communicate with me on feeding tubes, and other items I’ve now forgotten. He recommended I take someone with me for support. Smart guy.

 

Midway through Mike’s visit, I realized that I was using the name Ben. It felt weird. Finally, when he was leaving, I said, “wait, your name is not Ben, is it? ”

 

“It’s Mike, and it’s really okay, because it’s not easy to work with only 30% of your brain available.” His compassion and gentle smile took away any feelings self-criticism and left only joy for the gift of his visit.

 

 

 

 

Then, at 6:19 pm Friday night my PCP called. My G.I. doc got back to her and has decided to give me a combination feeding tube. There are G-tubes and J-tubes. The G-tube goes into the gut/stomach, the J-tube goes into the jejunum. Mine will do double-duty for reasons (sing it with me now…) I can’t remember. She also gave the not-so-fun-news that the feeding tube doesn’t relieve the pain and nausea, thereby introducing my new life-companion. Feeding tubes, for me, can only assure adequate nutrition. I miss my brain, so I will take the trade-off.

 

 

 

 

Radiology called this morning and my tube consultation is Monday, February 10. I’m taking two awesome anchors in my life as support to help me track the information.

 

 

~

 

 

 

 

My days are filled with constant outpouring of love and support. I’m also grateful for those who challenge me. That way I stay involved in full spectrum living, which is my version of remaining an active participant in this precious existence.

 

 

 

~

 

 

 

Thank you to all who love and challenge me.

 

 

 

 

 


 

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