Ho'Spice

The past couple of weeks have been up and down. I’ve been okay this weekend.

I had a phone call with Community Hospice last week. They explained everything they offer and how they can help. I was referred to them by my palliative care nurse at the V.A. They can offer “concurrent care,” which includes services by them along with whatever the V.A. is doing (ie: me going through chemo). It could be wound care, chaplain outreach, social worker, supplies, prescriptions, massage, counseling, equipment (oxygen, a walker, a commode, et al), and more.

I know folks think “Oh, hospice. They go in, but they don’t come out.” Just not true. I’m not moving to some facility. They are coming to the house to look in on me. We arranged for an intake nurse to stop by today, which he did. He was here a couple of hours, asking questions, telling me what they offer, taking a record of my prescriptions, and more. He left some supplies that I can use. A regular nurse will probably start coming by a couple of times a week, starting tomorrow or Wednesday. They’ll probably make sure my meds are in my pill box. (I’ve been lazy and terrible about taking them the past few weeks. They are anti-viral type drugs that post-transplant patients take.) I’m glad to let her sort all those. I’ll learn more about what she plans to do as we go along.

I had a therapy session with one of the other VA palliative care nurses via video last Friday. She wanted to check in and see how I was, just let the conversation go wherever. We had a good talk, and we’re doing it again this Friday.

Tentatively, my next infusion chemo session will be May 21-22. Same short chemo, but we will also be incorporating immuotherapy as well. This is where the wait-and-see kicks in to see if I start to see/feel improvement.

I’ve been having a lot of spiritual/existential talks with friends. Despite my upbringing and my current beliefs, I still have questions/concerns about what is on the other side. Unfortunately, no one will ever have a solid answer. No one’s really come back and given a report. I know there are Near-Death Experiences that have been detailed. But I just needed something more. Oddly, one of the things have helped me drop so much of the nefarious accoutrements I grew up with as a Baptist was a book about an NDE. This one struck me more because it was written by a brain neurosurgeon; someone who wasn’t religious, believed in science as his guide for health. If he had this amazing experience, that had to hold some weight. Plus, there’s a clincher at the end of this story that really just nailed it home for me. So I’ve reached out to folks around me and had a particular conversation. I plan to ask this chaplain the same questions. I don’t want to get to the end with anxiety about it. I need to find an answer that dings a bell in me and says, “I’m good with that.”

My appetite is almost nothing. I’m so indifferent to food now. I have tried to eat something more than just apple sauce and cranberry juice for the whole day. I have anxiety around eating because sometimes I throw up. It's not a frequent thing, but it's enough that it gives me pause sometimes. Other times certain foods just repulse me by the smell alone. I do have a protein shake that I can fall back on, and often do.

Brian and I have had some tough conversations that need to be spoken. He’s doing as well as I am - we’re both tired, mired, and want to retire from all this. Please check in on him as much as you send me “how are you doing?” messages. (By the way, I’m never doing great, so - there’s your answer. Same goes for “How are you feeling?”)

By the way, the book is by Dr. Eben Alexander, M.D., Proof of Heaven. It was life-changing. I don’t say that about many things.

You can find a gently used copy on the cheap at ThriftBooks.com. (Using this link gives me credit on a free book when/if you spend $30, and you get a free book as well!