It’s Been A Roller Coaster

Hello, faithful Purple Firefox readers. It has been too long since the last update. Time has been very slippy. We are realizing that not only is there no pattern to how Mom is feeling, but also that this is going to be a really, really long battle.

A week goes by and it feels like a day. Mom has a couple of bad days and it feels like she has been struggling for months. Mom has a good day and it is hard to remember how bad it was.

And then I remember that I have not held up my end of our agreement, dear friends: I write, you read.

Well, buckle up, because I have some stories to tell, some changes we are going to make here, and some updates on Mom.

Daily Updates

Part of the reason for creating this blog was to document Mom’s experience, not just as a way to share what is going on, but also to be a resource we could use to look back over previous weeks as reference points.

Well, that is a great idea, but it does require some consistency in posting. And even though, as you may have realized by now, that I do enjoy writing, there are days when the emotional exhaustion is so much that I just can’t. I don’t feel like going through the process that I go through to write things. Sometimes it’s all I can do just to answer texts about Mom.

So, I am developing a middle ground. My wife and I both came up with an idea about the same time: what if we created just a simple, color-coded way to show what kind of day Mom had, with maybe a few notes, and I posted this every day. Assumedly, it would only take a few moments, and if I missed a day or two, I could go back and catch up easily.

Then, you could all at a glance see how things are, and we could visually look back and review weeks or even months at a time to remember just how many good days Mom has, and how they fall around her chemo days. Perhaps there is something to be gained; at a minimum, Mom could, on a bad day, see that she has had a lot of good days. Talking about that seemed to help a bit this past week.

I am thinking of a simple Green (Good Day!), Yellow (Meh), and Red (Bad Day) system, using icons like this:

I am going to go back over the days we have clear notes on and update each day with one of these icons. Maybe it will be nothing but the icon. I’ll try to add some context and notes. Or maybe I will make it into a calendar. I don’t know yet, but we will be rolling this out in the next couple of days.

We’ll see how it goes.

Best is Best

I went to Confession this past Saturday. I had missed Mass a few times over the past weeks, and I was also struggling with some other things, specifically with anger. I am not going to lie: this whole thing does piss me off on the regular. How could it not? But sometimes that anger seems to overflow. The priest, whom I did not know, gave me some great advice, but for my Penance he said this: “For your Penance I am asking you do something really easy, that is also quite hard. In your own words, pray to God for the Grace to realize what is the best you can do in any situation — no more, no less. And then pray to God for the courage to do just that.”

I don’t know exactly why, but it really resonated with me. Do Your Best is also the Cub Scout motto that I reinforce with my Cub Scout Pack each Friday night. You don’t have to be perfect, or even good at something — just Do Your Best.

It’s simple advice, though it is hard to accept, especially when your best might not be what everyone else expects or wants from you.

Growing up in this house, with Mom working shift work as a nurse and Pop working shift work as a police officer, there were two things that were always on: the coffee pot and the TV. Mom, like me, really enjoys watching comforting shows over and over and over again. When exhaustion and stress peak, sometimes just mindlessly following along with a show that you love can be a great escape.

For Mom, for many years, that show was M*A*S*H. She loved it, Pop loved it, it was always on (either on syndication on TV, or one of the many 8-hour VHS tapes we had with episode after episode, season after season). And, so, I loved it. I still do.

One of my favorite episodes is “Dear Sis” (S7, E14), where it is Christmas time, and everyone is depressed to be in Korea, in the middle of the war, especially the outfit’s chaplain, Father Mulcahy, who feels he is not making a difference. At one point, when wounded soldiers arrive, Father Mulcahy tries to calm a soldier on a stretcher awaiting treatment. The soldier, frustrated, punches him, and Father Mulcahy, a former boxing coach, punches him back. Father Mulcahy is devastated. He immediately regrets his actions and feels tremendous guilt.

Eventually, Father Mulcahy breaks down, and says amidst tears to Hawkey: “I am supposed to be Christ’s representative!”. Hawkeye responds with, “All you can do is your best.” And when Father Mulcahy says “Some best!” Hawkeye answers, “Best is best, father.”

The episode ends with a tremendous scene, and while I won’t spoil any more here, it is so good I watch it every year at Christmas time. It might be my favorite episode.

Father Mulcahy, like all of us, is human. Just a person. Sometimes we all fall short. Best is best.

Was I compassionate to everyone around me at all times these past few weeks? Nope. Did I remember to get Mom’s prescription refilled on time? I did not. Did I post here as often as I wanted to? Not in the least. Did I show up for every commitment I had, or meet every work deadline, or respond to every email and text I should have? No, no, no, and no.

The stress is real. The exhaustion is overwhelming at times. The hair is turning gray. A month ago feels like a year ago one second, and it feels like a few days ago the next second.

What can we do?

Best is best.

(I still fee bad about that prescription though.)

So How Is Mom Anyway?

I know you are here for the details about Mom. I want to make sure that you are getting your money’s worth.

The last time I posted, we had just wrapped up Chemo 2 on May 4th. Now it is May 16th, and Chemo 3 is tomorrow.

So how have things been?

Most days are mostly good, some days are great, and some days really, really suck.

When Mom came home from Chemo on that Wednesday, we started a string of great days. Mom’s sister was visiting from Arizona, her nephew was visiting from Georgia, and Mom was feeling great.

By Mother’s Day, Mom was feeling so incredible that it took our breath away. My sister Angella posted the following on the Purple Firefox Facebook Page:

Happy Mother’s Day to you all!!!!

What an amazing day with my beautiful momma! Second round of chemo is over and mom is doing amazing! She is busy tending to all of her plants and fixing up so things are exactly where she wants them, she is having a wonderful day .

She has an appetite and food is smelling and looking good to her again! She is making omelets this morning- what a difference from round 1.

She has a ton of energy and is smiling and singing, I am amazed at her strength. She sat on her beautiful porch this morning and said, “What a wonderful day to be alive”.

Everyone has made this possible with all of your love- thank you for being part of “purple firefox”, I wanted to share my thanks and love to you all, TODAY IS A GREAT DAY!

— Angella McIntyre, May 8, 2022

It was, perhaps, the best day yet. Mom looked, and felt, so healthy, so herself.

We were all especially excited because we had made it past the point in the first round of chemo that Mom had bad days, so we thought we had made it!

But the rest of the week?

My mom’s sister, my Aunt Jeanne, has been consistently warning us that one day will not predict another day, and that we have to be prepared for every day to be its own day: maybe better, maybe worse.

But we had a pattern! Last time Mom felt bad after *this* day, so surely if we could get past *that* day this time, we would be in the clear. This is how my brain works. I *want* there to be a pattern. Was there?

Nah.

Monday and Tuesday were OK… Mom seemed a little tired, but it was a busy weekend, and the steroids were drawing down.

We had an at-home nurse come and give mom IV fluids twice this week, which seemed to help, but as the week went on, Mom felt more and more down.

By Friday, Mom was definitely in the weeds. Fatigue, pain, nausea, grumpiness.

By Saturday morning, it seemed like Mom crashed. Despondent. Unable/unwilling to eat. Pain. Exhaustion. Mom was scared, we were scared.

My sisters and I started scrambling, seeking something we could do, some new plan, some new action. We feared Mom was going to want to stop and, while we will support her with whatever her choices are, we didn’t want to leave any stone unturned.

We sat down with Mom and had a long talk about options, about things she could do, and things we could do if she needed more help. Either way, Mom needed help to eat more and to manage her pain — things could not continue as they were.

We reached out to Aunt Jeanne (a nurse with a ton of experience) and to my mom’s best friend, my Godmother, my Aunt Ellen (also a nurse with a ton of experience). Both had perspectives and advice that helped. Aunt Jeanne came down Saturday night to sit with mom and help, and Aunt Elle came down and sat with Mom Sunday morning and talked through some options.

By Sunday afternoon, Mom had really turned a corner and by Sunday night was full of energy and enthusiasm.

When I got here this morning, early, to help mom with breakfast before she left with Aunt Jeanne to get lab work done, I found mom up and dressed and already made herself food and ate it. Later in the morning I went to remind her to take some meds, and she had taken them already, had already eaten again, and was out in the garden with a shovel digging up and replanting stuff.

Is this a new pattern? Probably not; surely Aunt Jeanne would say it is not, and she has not been wrong about that. But, it is a great day.

Now we wait for the lab results to come in, to see if those white blood cells are high enough for chemo 3 tomorrow.

And I await the pharmacy to call and let me know that script is ready.

We are all doing everything we can, especially Mom. It is all we can do!

Best is best.

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