Trying to stay in the present

All I can think of is tomorrow. Tomorrow is Monday, and Mike and I will be traveling to Morgantown, to the medical complex, to begin a week of appointments and procedures that will largely determine our future.

It all starts with a Covid test. Ruby Memorial requires the test and it can't be more than 72 hours prior to whatever procedure the patient is scheduled for. Nor can it be a rapid test. Doesn't matter if you live 200 miles away. Doesn't matter if you've been vaccinated. I get that they're being safe and careful and all that, but it's not easy being sick during a plague.

So first things first. Covid test on Monday. Tuesday is a free day. Except it isn't exactly free since we're staying in a hotel and eating restaurant food. Wednesday is the endoscopic ultrasound, which will confirm the site and size of the lesion growing in his esophagus. More sensitive than the PET scan (which showed no metastasis nor a tumor, but we're going with the pathology report on the biopsy), the ultrasound will also help his doctors determine if some kind of surgical intervention should be done prior to the start of chemo.

Thursday is the surgeon's appointment, again at WVU, and we can return home following that. He has an oncologist's appointment on Friday in Beckley – only an hour away, instead of five. 

Today. Get back to today. Stay in today. Next week will take care of itself. Today I need to clean, pack, do some laundry. We'll go to church this morning and maybe walk this afternoon. Or maybe not. 

I made a commitment to my cousins to send them copies of a book our Aunt Minerva wrote – stories about her childhood as the oldest of five sisters. The last story in the book is the one in which my father is born. I was going to copy the pages, but I think I'll retype the whole thing – all 107 pages! – and soak all those stories in again. 

I can begin typing today.

Today. Stay present. 

Foreshadowing

Remind me NEVER to assume any day will be normal. EVER AGAIN.

My blithe little post yesterday morning celebrating a somewhat normal day was definitely foreshadowing for what was to come. And what came was a day filled with frustration, big and little, mundane and dire.

If the United States of America's healthcare system worked like the rest of the world's industrialized countries, insurance companies wouldn't be practicing medicine. One Humana employee determined that the test my husband has to get next week, which had been scheduled by A NURSE at the direction of A DOCTOR (both highly trained and multi-degreed health care professionals), had to be rescheduled for two days later or they wouldn't pay for it.

Because of that one decision, two other doctor's appointments had to be rescheduled (one of them twice), and our hotel reservations had to be changed and an additional day added. And that's just on our end. We have no idea how that rescheduled procedure affected anyone else in the system. Did another patient get bumped from the list? Will the operating room staff be required to work overtime? The ripple effect is real, y'all.

All in all, we either took or made about 30 phone calls yesterday. 

I thought all of it might be moot if my husband had a stroke while we were trying to get it all straightened out. 

The dust has settled, but the frustration has not. America needs to implement a universal healthcare system. Period. We won't benefit personally, but our children might and our grandchildren will. And they deserve better than what we've dealt with for the past 24 hours.

Stress-induced overeating did not happen, thankfully. 

But it could have. I have no idea what today's challenges will be. I just know there will be some. May I handle them with some semblance of grace.

Thanks for reading.

A somewhat normal day

I ate healthfully yesterday, spent far too much time playing games on my phone (I've always said they are brain games, but honestly, it's an escape mechanism, lately), and took a nice, long, solo walk. Didn't talk to a single clinic or health care professional all day. That's what made it somewhat normal.

I forgot to tune in at 3 pm to the meal-planning webinar I'd registered for. But I looked at the handout, and it didn't really tell me anything I haven't already read about. I fall short putting it into practice. 

Figuring out what to have for dinner is an almost daily dilemma around here, and is largely based on what I have on hand. Since the nearest grocery is 12 miles away, I keep a well-stocked pantry and there's generally plenty of frozen beef, pork, and poultry in stock. 

But I guess when you plan meals ahead of time, you make a grocery list at the same time. What a concept! 

I don't feel like I need to plan breakfasts or lunches. I always have wraps, low-fat cheese, tuna, eggs, etc., and can come up with something to get me through the day.

Dinners, though? Yeah. I need to plan dinners. 

For now, with anticipated travel for medical stuff, I guess I'll just keep winging it. 

Although … I'm getting the car serviced in a couple of hours, and will be just one mile from that grocery. Plenty of time to plan for at least the next three days. 

Baby steps.

Here we go …

The does-he-or-doesn't-he-have-cancer saga continues. 

(For those of you just joining us, my husband had a one-year follow-up endoscopy of his esophagus June 1. He was treated for esophageal cancer in 2019, and declared cured. A small lesion was found, biopsied, and identified as an aggressive and rare esophageal malignant tumor. BUT … a PET scan last week was clear. No evidence of metastasis or tumor. So we need more studies at a teaching hospital.)

This coming Friday we go for a Covid test, either to Summersville (90 miles from home) or Morgantown (200 miles from home), prior to having an endoscopic ultrasound procedure done in Morgantown on Monday. The result will determine if and what kind of treatment he will pursue.

Ruby Memorial Hospital requires a Covid test even if you've been vaccinated. And the test must be done within 72 hours of the scheduled procedure. 

Now we could have the test right here at home. We have a hospital that does them. But they can't GUARANTEE that results will be available by Sunday. (They usually have results in 24 to 48 hours, but … a GUARANTEE? They won't.) And since the patient is … um … determined that there shall be no screw-ups, he's more than willing for me to drive him to a distant WVU-affiliated location for a nasal swab. 

(He would get so lost if I didn't do the driving. And he doesn't know how to drive my car. FOR REAL. And his truck is old and might as well have FARM VEHICLE spray-painted on the side. And yes, I'm an enabler when it comes to him not driving. But seriously, I would worry the whole time.)

I'm trying to find some compassion for him. I was SO angry yesterday. But I managed NOT TO EAT MY ANGER. That was a huge win.

Repeat: I managed NOT TO EAT MY ANGER.

So anyway … here's how this week looks:

Today (Wednesday): FREE DAY. I'll take a long (four miles) walk and spend some time in the sewing room. Also, I registered for an online meal planning class at 3 pm. I've never been able to make meal planning work for me. Hoping this class will help me figure it out.*

Thursday: Get the car serviced at 8:30 am, then run some errands. And walk.

Friday: Drive, drive, drive, nasal swab, turn around, drive, drive, drive. Depending on when we get home, maybe walk.

Saturday: FREE DAY. Looks like it might rain. If it doesn't, I have a walking date set up with a friend and then I'll straighten up the house. I don't like coming home to a messy house, and we'll be out for a couple days. (We have an alarm system and we're not afraid to use it, so don't get any ideas about breaking in while we're gone. HAH!)

Sunday: Head to Morgantown after church.

Monday: Procedure day. We haven't been told what time he's on the schedule yet. The procedure itself takes one to two hours, followed by about a half-hour recovery. I'm guessing an hour for prep. So half a day at the hospital and then back to the hotel. 

Tuesday: Appointment with thoracic surgeon in Morgantown. This appointment was scheduled a couple days ago, and I'm glad it worked out to follow the endoscopy appointment. We'll come home Tuesday afternoon.

How will I work WW-friendly meals into that schedule? Better yet, will I work WW-friendly meals into that schedule? Who the hell knows. I'd love to make that commitment right here and right now, but one thing we've learned traveling post-Covid is that restaurants are frequently closed for dining in and menus are limited. So we'll see, and I'll do the best I can. One thing I don't need is the added stress of not living up to a blue-dot commitment. 

I'm sure I haven't thought everything through, and there will be hiccups along the way. There always are hiccups. I've gotten pretty good at this go-with-the-flow thing, yesterday's anger notwithstanding. Note to universe: Don't fuck with my Zen. Please.

I'm writing to keep things straight in my head, to get my emotions out so they don't overcome my good intentions, and to entertain myself. If you made it this far … thanks for being here. 

*I usually go to the grocery with a list of basics that need to be replenished, and then I add whatever is on sale to the cart. Meals are "planned" around what I bought. My guess is that when you plan meals ahead of time, you buy what you're going to need to cook what you said you'd cook. What a concept!

Insert record scratch sound effect here

Dr. Hopkins with Mercer Medical Group inserted a chemo port in Mike’s chest yesterday, while I ate whatever I could get my hands on to comfort myself. No one should have to do this twice. (Although I'm sure MANY have done it more than twice.)

Before we left the hospital complex, he picked up a copy of the PET scan that was done last Thursday, along with the report. 

The good news is, the PET scan shows no evidence of metastasis.

The really great fantastic news is, the PET scan shows no evidence of a tumor in the esophagus.

As we understand it, PET may not detect very small tumors, so more studies are being pursued. We plan to go to WVU in Morgantown for an endoscopic ultrasound, a very sensitive and sophisticated procedure.

We also plan to consult with a thoracic surgeon, a gastroenterologist, and the oncologists who treated him previously.

As for me … I plan to not beat myself too vigorously when I make poor food choices. This is stressful. WAY stressful. I also plan to make a meal plan and stick to it to the best of my ability. 

Under the circumstances.

Thanks for reading. As for understanding … yeah, I don't understand it, either.

Onward

The coming days, weeks, and months promise to be challenging. Spending time with my son and his family this weekend, has been good for my heart.

I'm going home later today, with a renewed commitment to look for the joy. I know it's out there.

Certainly one of those joys can be found in taking better care of myself physically. While eating whatever I want whenever I want it is joyful for a moment, the result is painful and depressing. I need to keep this in mind, count to 10 before I make a decision to eat, eat crap, or even eat at all.

My daughter-in-law plans their meals ahead of time and finds great joy in doing so. Less stress and hassle at the end of a work day. She's off for the summer, but will continue her meal planning because it brings order and joy to her days. I've tried meal planning and never been able to make it work for me. Time to try again. It will be helpful to have one less thing to figure out each day.

Tomorrow is chemoport insertion day. We'll also have surgical consult appointments at WVU this week. I imagine my tooth extraction appointment will be postponed. Can't be helped, and my tooth doesn't hurt any more, so I can wait a while longer.

Onward. With joy.

 I love to change the world,

But I rarely appreciate things as they are.

I know how to give,

But I don’t always know how to receive.

I know how to keep busy,

But I don’t often listen.

I look, but I don’t often see.

I yearn to succeed,

But I often forget what is truly important.

Teach me, God, to slow down. May my resting revive me. 

May it lead me to wisdom, to holiness

To peace and to You.

-Rabbi Naomi Levy

•••••

I read this yesterday and it was just what I needed to read. Maybe it's just what you need to read, as well?

Thank you for being here.

Crossing the bridge to get to N&D's place

Dinner with friends last night could be the last social event of our summer. And it's not even officially summer yet! We soaked it all up – the food, the scenery, the conversation … the love. Thank you, N&D.

As we were heading out the door to go to their place, Mike's phone rang. It was Dr. Thakkar from WVU. Not someone from his office. Himself. Letting us know to expect a call early next week to schedule an appointment to see him and Dr. Abbas.

Thakkar's specialty is Advanced Therapeutic Endoscopy and Dr. Abbas is Chief of Thoracic Surgery. Should they determine that Mike is a candidate for surgery, that will be the first step in treating and/or curing his cancer.

For me, that call was a tremendous relief, and gives us something to look forward to. We're almost dreading the results of Thursday's PET scan. 

I took pretty good care of myself yesterday until mid-afternoon. Baby steps. 

I'm going to NC today. Will be my first visit there since March 2020, thanks to Covid. And most likely will be my last visit there until this fall, thanks to cancer. I'm taking Claire a cake, and I'm going to enjoy a slice. 

Life is short.

 

Fifteen days ago, my husband and I read his pathology report, which informed us he had a rare, malignant neuroendocrine esophageal tumor. Since that time we've been coordinating a variety of tests and appointments with multiple hospitals, clinics, and medical professionals. It's been a roller coaster.

We're going for a cure, although that isn't likely. And that makes me incredibly, profoundly sad.

In all honesty, he can be extremely irritating at times. He's repetitive. Somewhat controlling. Wants what he wants when he wants it. 

Sometimes looking at him is like looking in a mirror. HAH!

But as irritating as he can be, the thought of living without him makes me … sad. Just … sad.

We spent yesterday afternoon in Princeton, WV, where he had a PET scan that will show how large the tumor is, its precise location, and whether it's metastasized. The tumor was found during a routine endoscopy, something he needs to have done regularly since he had a different esophageal cancer (CURED!) in 2019. 

I never thought we'd be doing this again.

While he was in radiology (a PET scan takes a couple of hours) I went to a nearby Wendy's to write some thank-you cards to WV Can't Wait donors. And since I was in Wendy's, and since I hadn't eaten since 7:30 am, and since I was feeling sad, I ordered a small chocolate Frosty. (The clerk asked me what flavor and I said, "Chocolate. Is there any other flavor?" Which was meant to be funny but he took me seriously and answered, "We have vanilla." His female co-worker laughed; she knew exactly what I meant!)

Before I go further, I need to say that when Mike got sick in 2019, I was a WW member and had lost 25 pounds, with about that much more to go. I stalled out and eventually gained back 15 of those pounds. I've not been able to lose it. We had a few months of relative normal when Covid hit, and while I didn't gain any more weight during quarantine, I sure didn't lose any. And still haven't.

A month or so ago, I renewed my commitment to WW. It's been difficult getting back on that horse, and the past two weeks I haven't even tried. But I wrote a little post on Connect (WW's social media outlet) and promised to write about my feelings instead of (or, occasionally, in addition to) eating them.

So that's what No More Running will be about for now. My husband's treatments will last all summer, and that's if he's able to start chemo within the next couple of weeks. Surgery may be an option; if so, that will happen first. I expect we'll be having surgical consults at WVU next week.

But today … nothing is on the schedule except laundry, a lovely long walk, and dinner with friends. I don't know if anyone will find this. If you do … thank you for reading.