“Once more unto the breach…”

In many states once you get outside of the city areas the highways have poetic names like “Highway M” or, “Highway Z” or, “Highway PP.”

Every time Kathleen and I drive through Wisconsin we pass a sign that reads, “Hwy V”  I have yet to be on top of my passenger duties enough to snap a photo of the sign, but it always makes me smile and imagine that it’s pronounced, “Highway The Fifth” and can almost hear, “Once more under the bridge, dear friends…” in my head.

So yesterday I reentered the world of Chemo, this time for the third time, and the day was rough.  The chemo itself wasn’t TOO rough, it’s never terrible while I’m getting it.  It takes about a week for the effects to kick in.  But the start of this round are a few out-patient treatments, which I like better than staying in the hospital.

The main reason I like to be out of the hospital is that it’s always a crap shoot what kind of nurse one will get, and so far my odds are running 5-1 “excellent nurse, very helpful” vs “nurse who can’t be bothered, not great.”  The type of nurse that’s assigned directly affects the quality of care, kindness means SO MUCH and when it’s missing from the nursing equation, it can be a bit hellish.

Of course I’d rather have an efficient nurse than a sweet-but-clueless nurse (I’ve SELDOM had the latter, for what it’s worth) but overall I’d prefer an efficient and KIND nurse.

So yesterday, my day started with a Lumbar Puncture (and we know how I love those…)

I checked the online portal and was surprised to see my in-time had been changed to 9:15 from 9:30, so I rushed Andy along and we made it, but just a bit late.

Upon check in, though, we were told that the appt had been cancelled.  I’ve become used to Health East cancelling my appts on a dime, usually after an extended fasting period (this happened TWICE last week) but I was pretty frustrated.  The admin who checked us in was also flummoxed, she knows me and remembered my name and was surprised to see my appt had disappeared.

She asked us to wait to the side while she got a nurse to explain the situation, so we sat for about 20-30 minutes.  Finally a nurse came out and did the nurse-walk think I really hate (where they walk really fast but I can’t keep up because I’m on walker and in pain…)  As we entered the dressing area he turned to us and said, rather curtly, “You should have been here an hour ago, you know…”

And and I were NOT having it.  We kid of tag-teamed him, “No, we weren’t – until an hour ago the online portal said we should be here at 9:30!”  He was not having it, he insisted that it was folks like us who were late who held up everyone for the rest of the day.  We asked for a different nurse.

The new nurse was lovely, but she couldn’t access my port for love or money.  My port has been a problem since it was put in, and I always prepare myself for a decent amount of pain as they try to get the needle to work into the diaphragm of the port.  Even with the cream it’s very painful.

So as time ticked away, and they had to take person after person ahead of me, it became clear that this wasn’t working.  They sent me up to the chemo beds and the nurse in the chemo area had been able to access the port, although it took a bit of fiddling with a type of blood thinner to actually get my ‘blood draw’ to come through correctly.  I received my several hours of different chemo drugs.  By this point I was starving, but no food was allowed as the lumbar puncture’d been rescheduled for 3:30.

Back down to Interventional Radiology, this time I was the only patient in the area and was taken in pretty quickly.  I explained about the pain the last time I had the procedure and several of the nurses had been at previous non-painful punctures with me, so that was a help.  We made sure that a decent amount of time had passed between starting the pain meds and the actual puncture, which was enough to make it practically pain free.

Such a long, intense and confusing day is almost harder for Andy than it is for me.

Andy hates to wait in the hospital for hours, so generally after I’m settled in someplace they’ll bug out and run home to check on Gerry, take the dog for a walk, and come back in time to see me settled into my next appointment.  Sometimes this works great, but sometimes this can lead to a bit of a traffic nightmare with Andy finding themselves between locations when I need them near me for some information stuff, or with it just taking longer to get from point A to B than Andy expected.

So as frustrated and exhausted (and hungry) as I was at the end of my day, Andy was almost MORE frustrated.  Thankfully they had brought me some food, so when the only think I really felt like I could eat from the menu (red jello) wasn’t available, Andy had an alternative for me and it was DELICIOUS.  But we had a rough ride home.

These long, long, hungry and painful days are not fun for ANYONE.  Maybe we should’ve taken “Highway The Fifth.”

Scary Days On The Horizon

Tomorrow (Wednesday) I will be getting a Lumbar Puncture, and I’m a bit afraid. But not as afraid as I am for THURSDAY.

Thursday is the day I have been dreading ever since I read “Death Be No Proud” when I was about 12 years old. A girl never forgets her first Spinal Tap.

DBNP was a memoir by John Gunther, writing about his son’s brain tumor and death at age 17. I remember it was a very tough read, but the most daunting chapter was the Spinal Tap.

Things have improved dramatically since 1949, when (as one of my doctors joked) they used to do Spinal Taps with a can opener.

But I’m terrified. I’m terrified of the procedure, and I’m terrified of the Lumbar Puncture on Wed. I watched Gerry get both of them 12 years ago in his initial diagnosis up in St. Paul (at St. Paul Radiology, same folks who are doing MINE) and I saw how much the pain impacted him for DAYS after.

I also saw Gerry get second (and third and fourth) of each procedure at the Mayo, and how he barely felt anything because they choose to sedate for these procedures.

Since my admission to HealthEast/St. Johns I’d been ASSURED by the doctors I met that I could have both procedures done with very strong anesthetic. This has been a bit of a fight, and it’s clear that NO ONE is happy with me, but tomorrow I’ll be doing to a different facility within HeathEast to get the Spinal done on Thursday.

Tomorrow I’m back at Ol’ St. John’s for the Lumbar Puncture, terrified.

Bone pain is a scary thing for me. I have a hard time when anyone does anything to my TEETH (outside bones, per Kimmy Schmidt) and sometimes dentist visits have to be broken into TWO visits because – pain.

If I sound scattered, confused, I am.  It seems that NO ONE can clearly tell me what is a Spinal vs. a Lumbar Puncture vs. A Blood Patch, but I’m getting all three of them, over the next two days, and I wish I could be anywhere but here.

I’ll be visualizing the loveliest, longest, most beautiful warm-evening bike ride ever.  Or maybe a magical Winter evening ride, around the lake, with all my skin covered and twinkling lights strewn over my bike.

From the moment someone said, “Cancer.” I knew that these would be the scary days.  Damn I’m scared.