It's the title of an imaginary sitcom that often plays in my mind.
And I did it again.
Thankfully, the consequences are fairly entertaining. Let me know if you want one...
Once while I was recounting a story about some epic fail I realized how often I have these stories.
The events are different, but there is one commonality.
I screwed something up.
And not in some small way.
No.
In some grand way that makes perfect sense when I explain it and never makes any sense without the explanation.
It was at that mid-story moment when I became painfully aware, while there are always different reasons for whatever happened, the common element was me.
It's me.
Sigh.
Please don't fear. My sigh is born of acknowledgment, not depression.
And usually the choices that landed me in some predicament, well, I wouldn't change them for the world.
social norms don't live here
Not because I don't see value in them. I'm just not very good at keeping up with them.
Some of them I am aware of. Some I miss altogether. Some I just can't wrap my brain around. James simply doesn't care for norms. He's aware of them, but exists wholly independent of them. Eli is blissfully unaware they exist. Like completely unaware. And it shows. All the time.
So we often don't operate within their boundaries.
I do, however, understand the social pressure to spay and neuter pets. I do. And I can get behind that one. Though, in my soul I think we mess up a bit of nature's plan and part of her beautiful gene diversity in our domesticated animals with 'responsible' breeding. Most breeding programs have little to do with the natural diversity programmed for health and well being. Poor domesticated animals. They may be ruined beyond repair.
I've also noticed Pharma is increasingly addressing their respective deficits, too.
I'm quite a fan of the mixed breeds. Helps the genetics a bit. But a plain old mutt is still probably best.
I once had a very tiny chihuahua named Autumn. She was really too small when I took her to get fixed. It caused her a great deal of swelling and pain. I vowed I would never do that to another animal again. I'd let them gain a little more size first. So, as each of our cats got to just above three pounds, I took them to get fixed. Most were ready by late fall. But Bear was so tiny, and being female I knew she would have a tougher procedure than all the boys. So, I planned to take her in late winter/ early spring.
Trouble was. I got preoccupied with me late winter/ early spring.
And I completely forgot.
Just forgot.
Then one day in late spring she did that weird meow.
If you've ever heard a cat in heat, you know the one.
I knew it the minute I heard her.
And I remembered.
No.
No, no, no, no, no...
Oh, crap!
Do NOT let that cat outside!
Um, try to keep one out of the six cats, who mainly live outdoors, inside. Impossible.
Our shack, for those that haven't seen it, is made of two parts connected by an outdoor breezeway. You have to go outside to get back inside.
The smaller side is a one room 1800s log cabin. Complete with holes straight to the great outdoors.
The very next day, Motley was barking up a storm in the smaller side cabin.
I thought he had a raccoon cornered in there by the tone of his bark.
When I went to shoo it out, I saw one of my cats trying to escape my dog. Which is weird, because they are friends. As I was trying to make sense of the situation, I began to realize that wasn't my cat.
It was some mangy, ugly, extra large, one-eyed, pirate cat.
He flew out of the cabin with the dog close behind and disappeared into the woods.
Then came my cat.
A slow, calm, contented cat.
At peace with the world, cat
And I knew.
I failed.
Social stigma would soon follow.
We would have kittens in a world that needs no kittens.
I'm that lady. Rocking the squalor thing we've got going here.
Bear delivered five.. And they were all sick, ugly, weird little pirate kittens like their dad.
So much for my mutt theory, eh?
They are no longer sick, I'm glad to say. But that took some work.
Two are still pirates, but looking better and still with eyeballs. Eyeballs are good.
Definitely easier to find homes for kittens with eyeballs.
And I think the last baby is weaned as of today.
So now, Bear can get fixed before this happens again.
And if you're in the market for a pirate cat of your very own, let me know.
Like for real
...let me know.
I can hook you up.
Houston, we have a problem.
James and I have never been on a trip together. So, even though the circumstances were what they were, it was fun to hit the road with him on an adventure. James' idea of vacation is eating at every restaurant you can't find at home. And he got to do a lot of that.
Well, at first he did.
We were, of course, on another mission.
Dr. Burzynski's clinic is really a breath of fresh air in many ways. They have a very awesome set of desk ladies. The nutritionist is amazing. I love our nurse. I really love the praying lady in the infusion room. She talks to God. And you can tell they are close.
Those are important people in an infusion room.
In other ways, it's like everywhere else.
But guys... He's the real deal. I could see it in small things all over the place. But unfortunately I don't qualify to try his medicines after all. You see, even though the oncologists agree everywhere I go... I don't have time on my side. Very often people with Waldenstrom's do have time on their side. It can be indolent, or slow growing. Mine isn't that one. So I get the added bonus of tagging a time frame onto the incurable diagnosis thing. But because some people have time on their side, the FDA does not designate me 'terminal.'
Which is kind of funny.
Because you could call life itself a terminal condition if you really think about it. Everyone is terminal.
I should interrupt myself to clarify. I can use one of the three medicines Dr. B created for his patients. It's called sodium phenylbutyrate. It is recognized and approved for treating a kidney problem. So, I can use it off label for cancer. You can do that. I cannot get the other two things they call ANPs.
Dr. Yi is the guy over the people who don't get the antineoplastons. His mannerisms remind me of my student Rocky. He's definitely a clock person. I can tell.
I wish I could get all the antineoplastons right now. I really do. At least to see if I could benefit from them.
But! I can get one of the three. So, there's that.
Win some, lose some.
Every single other patient I saw there was there for ANPs. People don't show up there for the chemo guy, I guess. They come for the antineoplastons and Dr. B. I could be wrong. Just an observation.
There were seven people I saw being treated. Various stages in this treatment. All in the FDA declared 'terminal' stage of their respective diseases. And I saw miracles. People alive who, according to some, should not be. They were happy to tell me their stories. They didn't know mine...which is why they were so honest with theirs, I think.
In order to gain future access to anything else, I have to actually be treated with 'standard of care' and fail. Which oddly will happen 100% of the time with standard of care according to statistics. Because Waldenstrom's doesn't respond to standard of care for long.
James and I wrote a check to a pharmacy the size of a modest annual salary. That is the price of chemo, people. And I scheduled a low dose chemo cut into half doses over two days. Of course there are steroids, and Tylenol, and Benedryl that accompany. And in my case, a targeted med called Rituxan will be added to this regimen once the IgM (that protein slushing up my blood) comes down a bit. Adding it too soon would make my blood turn to jelly. I would need six treatments spread over six months.
I started the permitted antineoplaston right away. It took six days to work up to the full dose. I did so with no side effects. Then we came in for the chemo. I'm getting ready for the infusions and listening to the people tell me their previous treatment horror stories. Treatments that were killing them faster than the ailments. One soul was sent to hospice to die after the last recurrence had spread to the brain. She wasn't mobile and couldn't dress herself or anything. Her husband was told she wouldn't make the drive to Texas. He loaded her in the car and did it anyway. She was the one telling the story. She had been there a month. Had dressed herself that morning and walked herself into the room with a walker. She was about to go home to continue her treatments. She said she feels better and better each day and is able to do more and more. I pray she does nothing but heal. Some people shared their stories, others I gleaned through observation. And they were each amazing.
day one of my chemo
Up. All. Night.
They told me it was the steroids.
Felt like the flu.
Complete with delirium.
I prayed every moment I was coherent.
Then I got on Google in short intervals between laying down.
Bendamustine. It's mustard gas. Illegal to use in warfare against enemies, but totally FDA approved to inject into the veins of sick people. Why is this the first option, and not the second? After the one that doesn't make you sick? After the one that isn't known to mutate over 122 more genes?
I got a little angry. And I got a little scared. I got a little sad. And I thought God was telling me this cancer wouldn't kill me, but this chemo would.
And I cried.
So, why in the world did I do it again the next day?
day two of my chemo
No good reason. Maybe because we paid for it already. Maybe because I started it already. Maybe I was just too tired to make any choices the next day. And after all, I didn't read that warning from God in the Bible. Words in the Bible are easy to understand. They are printed right there. In ink. When God is actually talking to you in the midst of delerium, it's so easy to second guess whether or not it was Him.
Then, the next day as the praying lady prayed protection over all my cells: there was an 'unless' in her prayer. An 'unless' I didn't have peace.
And I didn't have peace.
But I moved forward. And guilt set in.
Afterward I slept for a week. For real. And I did not feel well. For a week.
Epic fail.
day three of chemo
Yes. I only had two days of chemo. But my blood was so messed up that I had to sit all day in the infusion room and get IV fluids. I may have consumed too much water? Not sure what happened. Needed electrolytes. It was like day three of chemo, minus the chemo.
David was a failure, too
Why does it comfort me to think about this? Maybe because God calls him a man after His own heart. I mean he's a murderer! David made so many horrendous mistakes. In many ways, David failed at life too! In fact- there are so many stories in the Bible of failures at life. I'm in good company. Right up there with kings.
Some of the stories I have never liked, though.
Then life teaches me what they mean. And I get it.
Like the prodigal son. It always made me a little bit mad that the screw up got such a party when the responsible son did not. What's up with that? Seriously.
Throw the good child a party for heaven's sake!
Then, after my daughter left on her prodigal journey. I got it. James and I started planning a few things for her return. Not a party, but things we wouldn't be doing for Eli. But, Eli was going to have an inheritance that Ani would not partake in. And it hurts my heart, but there is a difference in their reward now. One may come shrouded in greater joy: but the more valuable gift still goes to the responsible child. The prodigal had blown his inheritance. His life would not be easier, though it was restored. His brother had a birthright to claim. And gleaned the added value of learning alongside a wise father. And that's fair. Even though I know God doesn't care much about fair.
His sense of justice doesn't always make sense to me. But, it doesn't have to.
I could go on with Bible stories that make me wonder what kind of God I have.
The older I get, though, I see what kind of God I have and those stories begin to make more sense.
He's pretty amazing.
Ha. Here I am. A germ among billions on a small planet three spaces from a mediocre star among billions in a mid sized galaxy floating among billions deciding that the energy force that set it all in motion is 'pretty amazing.' He doesn't really need my approval. Though oddly, He desires my love.
But, I probably should really start liking the Bible all the time. So I can avoid some of these life lessons about the passages I don't care for.
Anyway. God doesn't need us to be anything but failures. He's not concerned with our successes. He is interested in our hearts. Are they in the right place? He's notorious for using the very weakness in His people to do great things on this earth. When they have the heart for it.
teachers and their data
So. Being a teacher for so long, there are some things I will always do. It adds another facet to my weird.
I took all my blood test results from the start until now. From Bear and the cat scratch fever until the 17th of this month and made a graph.
I graphed five key components of my blood. I have the chart and corresponding bar graphs for each month all lined up. I noted outliers and marked dates to specific events that would make readings a bit artificial- such as transfusion day or chemo day.
And here's what I noticed:
All the high numbers that should be low were slowly lowering without chemo. All the low numbers that should be high were slowly increasing without chemo. All the numbers had taken about 4 months on supplements and diet changes to shift about 15% to the good.
Slowly- I was healing already.
Healing the body is a slow process, but moves all things to a better place.
(things like skin tone and hair thickness were even improving)
After the chemo, which is a blind blood killer, the IgM did go down. More rapidly than I was able to make it move. In those two doses it had jumped from the 15% to an 18% to the good. But! My white cell counts which had always been in normal range were down to dangerous lows. The red cell count was down lower than I'd had it recorded from before the transfusion, even! Lowest ever. Other things were released from marrow that aren't supposed to be in the flowing blood showed up for the first time. Yes, it kills cancer cells. It doesn't heal. There is a difference.
Everything suffered and everything will recover.
I expect as the cancer recovers alongside the red and white cells, all those numbers will rise again.
living in limbo land
I actually began to type this blog to inform you all that I had decided not to take any more chemo. That I would hit the Gerson therapy hard, and buckle down on the juicing and detox and find a way to at least manage this cancer if not make it go away as I move all the cells to the good- slowly- but without damage. And then I talked to Dr. Yi again today. He and Dr. B's son had a long conversation with me about the blood work and my choices. I feel Mini B gets it- what I am saying. That he understands my point of view. He's going to take all my stuff to his dad and go over everything again and talk to me some more at the end of the month. About possible options.
Dr. Yi truly has my best interest in mind. But his mind and mine don't operate the same way. He continually says that doing nothing is not an option for me.
Which shows how little he knows me, because doing nothing is completely an option for me! Dr. Yi is not a Christian. I didn't make that assumption. It came up. But, anyway. He doesn't know that the God who made me knew me before I was in the womb. He planned every day. He numbered them back then. He alone knows when I will die. And that date is so set into stone that I could do nothing and I truly think the same outcome will happen. So doing nothing is actually So. Very. Tempting. to me.
Much cheaper.
So much easier.
So much less thinking required.
And no more decisions! That alone keeps doing nothing as an option in my book.
I hate decisions.
But Dr. Yi sees the dangers inherent in my blood numbers. He knows the data connection. He sees me walking around every moment risking heart attack or stroke. It worries him. He feels I should hit it with chemo, knowing it won't cure. I should try to buy time. He feels it will give me two good years I can use to try other things and fight it other ways. And I can appreciate his thought process.
Dr. Yi is just concerned about my heart.
And he's willing to work with me and watch blood. Maybe not do six rounds.
Maybe even just one more could get the IgM to a more safe level where I'm not a heart attack waiting to happen?
Could I do one more round?
We agreed to wait to decide until the last of the month. I will have another blood test run. We will look at numbers again. We will make a decision. Maybe another round on 8/7. Maybe not.
it's not actually about me
You may question why I'd do anything at all, even take supplements if I truly thought God wrote an unbreakable destiny that I will follow. You'd be wise to wonder about that. The reasons are many, actually.
One is I know that there is a distinction between what my duties and responsibilities are before my God and what the outcomes are. The distinction is in ownership. I own the duty and responsibility part/ God owns the outcome part. I'm not supposed to worry about His part. Just mine. And this body, called His temple has a few rules. One is I'm supposed to care for it. Like the groundskeeper for the Whitehouse. Someone important lives there. In my case it's the Holy Spirit. And I'm supposed to take care of His house.
Fail.
Ha.
But I'm trying! I am trying!
This blog was intended to let people know what's up so I don't have to tell everyone what's up all the time. Yet, I've heard from some people that they have needed some things written in a few of the updates.
I'm not a writer. I teach kindergarteners to wonder about rocks. That's what I do.
Yet. God keeps telling me - I feel He is telling me, at least- that this cancer isn't about me.
I'm still not sure what His point is. But, I'm ever more sure He has a definite point. And I don't think it's about me. I think I'm just a helper to get something else done. And I'm trying to listen well and accomplish each part of the task as it is given.
God numbered my days. He numbered yours. He numbered us all. He has jobs for each of us to accomplish in the span of time He gave us.
My days are in His hands.
My job is to accomplish whatever work He put me here to do. And somehow lymphoplasmacytic lymphoma waldenstrom's macroglobulinemia fits into that work.
I've no doubt I'll have some successes.
Just as I have no doubt there will be days of failure.
Pure failure.
But God doesn't ask me to be perfect.
God is just concerned about my heart.
He's placed it in a refining fire. He knows how to purify gold.
Whatever He's making will be awesome when He's done.
Angie Frick can safely continue to fail at life, because God will ultimately win.