Thankfully this mess is not a typical situation. But it was indeed a situation.
This is the day I successfully removed one blood clot from my lines, but failed to get the rest.
My nurse was awesome. I was calm. I remembered to say 'thanks.'
And I saw the hand of God.
Ya'll. His hands are big.
So big.
one in three
I read that cancer affects one in three people these days. That number also seems so big. But then I consider the three people in our house.
I'm the one.
It gives me a false sense of security that the laws of statistics will somehow protect James and Eli.
I'm the one.
Whenever I'm in a group setting, though, I start counting up and dividing. Can't help myself.
I always have plenty of company. And of course, I start wondering who is in the club with me.
I know they say we simply have better diagnostics these days, but I just don't remember one in three people being that sick when I was younger.
one in four
I also heard that in certain counties in GA, meth addicts are one in four adults. This is also a crazy number. Start counting up heads and trying to pick those out.
Or maybe don't.
I do see them, though. Unmistakeable at times. They don't seem like one in four. However, we likely just discuss meth less than we do cancer.
James watched all of that Netflix show, Breaking Bad. I missed a number of episodes. My screen time allotment in those days was used up on Dora the Explorer and Word World.
But sometimes I get a chuckle imagining myself in my old class, rocking some plastic test tubes, pipettes, and my very cool elementary safety goggles. I might be able to crank out some Christmas Crack. But, I'm positive I'd never master anything with legit street value.
One scene I do remember from the show was the moment of diagnosis.
It was well captured.
You could feel the blur.
It's truly a singular type of blur in the moment that fades into a completely different sort of blur as time passes.
three in a million
James and I already knew my diagnosis when we sought a second opinion with the top Lymphoma guy at Emory. He would likely have the most familiarity with Waldenstrom's of anyone in Georgia. Most oncologists have never dealt with it as only three in a million get it. He would definitely be someone whose opinion would carry weight. And I did hear him out.
He is an expert in the field and understood this cancer well.
James kept a logical flow to the questions when I was lulled in and out of the blur of thought and words. And some of the things we learned that day have stuck with me.
One was what the standard treatment would actually look like. The length of the rounds of chemo, number of rounds, goal of knocking back a protein that mucks up my blood by about 60%. There was no goal to get rid of the cancer of course, because no standard treatment can do that. And treating beyond the 60% reduction would kill me first. Then, when the cancer recovered enough to muck up the blood again, we would discuss the marrow transplant. I could tell from the comments of two separate doctors that was left for the final course of action because I would not necessarily be expected to survive that part. If I could stand the chemo. If I could get the blood thinned enough. I could make it five years. The marrow swap at that point had never worked yet. It's a last ditch effort. If I didn't do the treatment, I would die from a stroke or heart attack in the next couple of months to a year in his opinion. Not treating it was not an option in his book. Many people with Waldenstrom's, you see, do not get treatment. If you have an early diagnosis, you wait to treat until it is late stage. Mine was already late stage. The end of the last stage, to be exact.
And that was April 19, 2018.
April 19th, 2019
It has truly been the most unusual year of my life.
As I turned the calendar from March to April this year, I noticed a few things.
It contains some big days for all my Jewish, Christian, and even my heathen friends. Many are on the same day this year, too. Sundown this April 19th was a full moon. It began Passover. And it was Good Friday as well.
It also marked one year.
One year from the day I was given one year.
It's a sobering thought.
On one hand.
Woah.
On the other hand.
Woah.
And it amazes me how close I was to overlooking Dr. Burzynksi. He was actually too much like a regular doctor for me. I wasn't interested. I was looking for an "alternative" to all that. But all my research on this specific kind of cancer and the epigenetic switches kept funneling back to him. That's when I reached out to his patients. And something even more amazing happened. Things just started falling into place. Some fell supernaturally into place. And every visit to the clinic since confirms it is where I am supposed to go.
It is expensive, though. And I have mentally, emotionally, and physically had problems with spending money on it. Especially lacking certainty that it would work. It's an expensive risk.
money is a funny thing
On multiple occasions I have breached the rules of etiquette while talking about it. Because even funnier than money itself are the rules for discussing it. I always forget until I'm too deep into the story to back out. That moment you mention a number and see a flash across the listener's eye. And you know. You know this person just realized you guys deal with different numbers. And then you're super curious... what ARE their numbers? More? Less? Way more? Gotta be.
And you get all distracted from your own story.
This is because money is so very relative. It isn't about numbers. It's about ratios.
It is literally impossible to understand someone's financial status without reframing it into our own equivalencies.
You simply have to change the numbers to understand the impact.
To me, Dr. Burzynski is expensive. To most of my friends, it would be expensive.
I actually don't often complain about teacher pay in GA. I feel like it's manageable. It is not a job you do to be wealthy. It is a service. A mission. And taxpayer funded. Recessions do hit hard, because you can actually make less each year with the numbers games they play. But, overall, we enjoy a job when combined with our low GA living cost, does not leave us breaking bad under normal circumstances.
Even so, I did what was in my power to make the most at what I did. And with a few years at EdS pay under my belt, I was OK.
(Non teachers: merit pay is the newer stupid way for a teacher to get a raise. The older stupid way to get a raise was to buy another degree. I actually did work for my degrees. Many people do. But many people also witness those who should fail don't. They get the same degree, rendering mine worthless. Purchased. It's a bummer. But true.)
At the moment when I felt my job was killing me not knowing cancer was its assistant, I took that year leave. We still thought we had things planned and were prepared.
One thing about being married to James Frick. You know how to budget. The man can take a dollar and make two out of it. And I'll never complain about his scrimping ways again. They have literally saved us too many times.
We thought we were going to be sitting pretty. Enjoying some fruits of our labors even if in a simplified form with me at home.
And when we sold the house, it was just in time to fund the start of the treatment. At that point, we were working on insurance coverages which did not pan out. We likely would never have begun had we known both my independent coverage and the one through James' work would deny coverage. When things are called 'experimental' and 'non FDA approved' on paper, they just don't get covered. Protocol.
In fact, when I asked them if they were indeed telling me they would spend more money on a toxic treatment proven not to work at all, also proven to cause other cancers at the same time, they said
"Yes."
They would spend more. Knowing it would not help me. Knowing it would harm me.
Because it follows protocol. That is a bummer. But also true.
A teacher here would be left in a breaking bad situation.
So, back in January I needed to return to Texas to purchase meds and get bloodwork done. And I did not have the money together.
I had about two weeks of IVs left as I was walking for my daily exercise. And I began to talk it over with God. He told me not to worry about it. I wasn't quite sure how to do that. I wondered what that would look like? Me not worrying about it?
As I walked, I stopped by the mailbox and there were two cards addressed to me. One from our former beautiful dental hygienist. And another from a beautiful photographer who took Eli's first pictures. Both of them sent me the same amount of money out of the blue. Not a small amount. A sacrifice. For me.
Right then.
Both listened to that whisper on the inside and then actually did what that whisper told them to do.
Both of them are indeed better people than me. I pray so many blessings on them.
And because of their actions I didn't worry about it.
The next day I called the clinic and made an appointment. I made it for the day I would have no more IV bags left. Because if I didn't have the money by then, I'd just cancel the appointment. Just so we all understand : my meds don't pause. I have an embedded line to my heart and they pump twenty four hours a day. I literally plug myself into the wall at nights to charge the battery. I clean and flush the lines and set up a new bag each day. Some days are smooth like butter. Other days, things don't work and invariably my beautiful nurse will be on her first day off in ages when I call.
She NEVER turns me away. Ever. Sweet soul. Walks me through everything from the simple to the emergency. Steady and calm.
The same day I chose not to worry about it, my sister called from Utah. She found out I had an appointment and not enough funds. And I guess God did not send her the 'do not worry' memo. So my very private sister asked people for money. Asked.
Publicly.
And then, perhaps the only person I know more private than my sister- James- reposted her post.
Publicly.
Then.
You guys! You!
You keep us breaking good.
Because you are so good.
Thank you.
It was incredible. People gave my sister money. Just sent it to her. And she sent it to me. And when I arrived on my last bag of meds, I had enough to buy another month. Then my sweet parents filled a large gap one month from a land sale, and I have twice had dear friends step in to fill large gaps at the moments they were needed. Many times I went to Texas without all the money. I have always come home with paid for medications.
Then. If that wasn't just miraculous enough.
My last trip to Texas was utterly and completely unplanned. The first weekend in April was one of those moments I called my nurse.
She was getting her nails done and trying to walk me through removing blood clots in my lines. After successfully removing a large clot only to find the lines had more, she did not want me to risk throwing one forward into my body.
My local surgeon was on vacation. The local doctor was unable to help me. The local ER was so awesome, but also unable to help me. In the parking lot at the ER I was thinking in my head- I wish I had enough money right now to go get my meds for the month. I'd just let my nurse, Donna, take care of me. She knows what to do. I would pick up my meds, get my blood drawn and be done with the month and head home. The thought was still rolling in my mind as I pulled out my phone. I had three messages. They were photos. Two of a letter and one of a check. Then the phone rings. Sitting in the parking lot at the ER.
The siblings of my dear friend pooled a month of treatments for me and sent it to her because they love her. And she loves me.
like...
what??
Who does that?
This isn't tiny.
It would have taken me over four months of work to earn enough to buy one month of my treatment. You can see how this would be unsustainable even if I were still working.
side note
I remember anytime my dad was out of work. He was busier than ever. Because if he was 'out of work,' it meant he had picked up three jobs doing something else to make money while he searched for a new job within his profession.
I am not quite like daddy, but still not sitting all day on my butt. I school Eli and I do invoicing for rental trucks. I can do these from wherever our new gypsy life takes us. And it's flexible for line changes and meds and junk. But the pay stinks. Haha. Teachers make more.
And as it turns out, that 'hidden paycheck' is a real thing. Pains me to admit it.
April 20, 2019
Here I am. It kind of feels like every day now is some kind of bonus round in a video game.
And it's all sitting in the very big hands of God.
Blood tests at first showed small changes, but for the better. Lately though, the changes are greater. I am very close to normal ranges for most markers. And the pesky protein decreases all the time. I'm almost to the 60% reduction we were looking for at Emory. Since Dr. B has a different goal, that does not mark a stopping point. We want to heal the marrow. Rid my whole body of any cancer. Even the incurable kind. With a different goal, the protein becomes less important of a marker. Because there is a healthy version of that protein as well. Made by good cells to fight germs. Levels should rise and fall in life. We watch it anyway. Because the other guys would. But we focus a lot more on hemoglobin. It's an indicator my marrow is doing its job. Once my markers are all in line we will do new scans. Once scans are clean we will change up the meds to a maintenance routine. Then just annual scans. This is the goal. And so far, so good. Moving in the right direction.
Yet.
I keep closing my eyes and imagining those big hands. The carpenter who could have built the table itself, but was smoothing out a tablecloth instead.
Setting a final Seder for His disciples.
All gathered together in Jerusalem for the Passover. He was the only one at the table who knew He was there to die.
To be the lamb. To be the matzah. To be the wine.
They still thought He had come to reign. A king.
But He had a better plan.
And I know it was by those plans I was healed.
Suddenly I see the same big hands, gleaming, though now scarred. Smoothing fine white linens for a reunion table. Even now He prepares that table before me in the presence of this cancer.
And I can't wait for the day I am seated there.
But once again, only He knows the plans.
His plans are always the best plans.
So in my bonus round, I shall break bread and remember His broken body gave mine life. I shall sip my wine and plead the blood that bought mine.
Redeemed and Justified. Both in body and in spirit.
I am so grateful for every day. But! When it is time to go sit at that table, I will actually go with joy.
My heart is full.
And I know from here on out, the whole thing is a bonus round.
And I know He's got it all planned.
It's in those big hands.