Monday, July 21, 2008

It's a long hard road, but I'm gonna get there.

Yeah, I'm a big butt lazypants with regards to updating the blog. I've been home from the Big House for over a week. Slowly my blood counts have been plummeting. My energy levels wax and wane pretty quickly. I'm neutropenic again. Three times a week, I hang out in Cancerville to get lab work done and have any transfusions I need. The rest of my time is spent trying to rest, stay cool, and have as much of a blast with Little A as possible. In the just the past week, we took an exciting walk through the woods in our rainboots and watched The Muppet Movie.

One of the big reasons I've not posted this week is my reluctance to discuss the huge elephant in the room: bone marrow transplant. Since my meeting with the BMT team at the beginning of the month, I've gotten about 20 pounds of literature about the process. Needless to say, that kind of volume of information can overwhelm a gal. The one big impression I've gleaned from all this reading is that the bone marrow transplant process is going to suck. Big time. Unfortunately, it's the best possible treatment for my subtype of AML, which, with chemo only, will return and will be more aggressive upon it's return. My leukemia would most certainly be the death of me if untreated or treated improperly. On the other hand, I could die as a result of the bone marrow transplant. Totally not cool. It's not a cure for AML; remember I've got cancer not polio. Still, I consider it the strongest course of treatment to buy me more time on this earth. So them's the facts, and I've got to put on my big girl panties and take my medicine.

Basically, the best metaphor I could think of for a bone marrow transplant is from Ender's Game. It's like wiping out the bugger race and then sending in human colonists to live in the abandoned bugger settlements.

See, the transplant process breaks down like this: Once a donor is found and coordination for the marrow harvesting completed, my butt is tossed back in The Big House. First, my body will undergo radiation treatments twice a day for six days, followed by two days of chemo. The real serious bitchass side effects will come from this treatment. The radiation/chemo cocktail will seriously inflame my mouth, throat, and GI tract, making eating unpleasant and difficult. My diet will be kept strictly bland for this purpose, and if it becomes necessary, IV nutrition will become part of my treatment. My energy levels will crash and burn. Rashes are a common side effect, and so because my skin is already super rash-prone, I'll probably end up looking like Miss Hiroshima 1945.

Once the site has been thoroughly nuked from orbit, just to be safe, I'll get my transplant. It'll go down a lot like a regular blood transfusion. From there it's a waiting game. Waiting to see if the new cells graft properly. My immune system will be trash at this point, so my risk of infection is doubly high. The White Coat Folks will have me on a myriad of drugs to prevent infection, as well as to manage any graft-versus-host issues that arise. Just like any transplant patient, I'm at risk for rejection. My new immune system will more than likely attack it's new host body in some way, shape, or form. The drugs will hopefully manage the severity of the attacks, and from what I've read, a mild case of GVH is a good thing. One of the more common GVH symptoms is a skin rash. AWESOME.

This stint in the hospital will take a month at least, if I don't develop serious complications from the transplant that would necessitate a longer stay. I'll be able to have visitors, just no sick ones. I'll be completely confined to my room. In other words, the best four weeks of my life.

Once I'm deemed okay enough to go home, I'll need a full-time caregiver. For the first few months, I'll have daily clinic visits and multiple transfusions. My medicinal routine will be quite extensive. I will more than likely run high fevers and need hospitalizations. There will be strict neutropenic precautions to follow-no fresh fruits or vegetables, no "dirty" chores, no contact with the cats, no cooking that involves raw foods. I'll be mostly confined to the house, no visiting places with large groups of people, and if I want to take a stroll around the block, I've got to mask up. Anyone coming in frequent contact with me will need to get a flu shot.

This semi-seclusion will last anywhere from six to nine months, followed by a slow reintroduction into the germy wide world. I'll still be monitored pretty closely to make sure my new immune system is grafting properly. Still taking a crapload of pills. There will also be monthly bone marrow biopsies to make sure my transplant also kicked out the leukemia. I'll need to get all of my baby vaccines again.

For the next year to year-and-a-half, my life will suck. There is a strong possibility I could get super-duper sick from the BMT. GVH could kick my ass in all kinds of crazy ways. I could also suffer long term side effects from the radiation like thyroid issues or other cancers such as skin or mouth. (Unfortunately, I won't get any keen powers from all that radiation. I was really looking forward to being able to blow stuff up with my mind or something to that effect.)

This is the giant white wall that has been thrown down into my path. I can't see around it or over it to the other side. I have no idea whether or not the treatment will be successful or will make mincemeat of me. I might not live through this or I could live my life with a body all chewed to hell. Naturally, this terrifies the living piss out of me.

At this point in the game, I need to start throwing all that fear shit out the window and start trusting in God. Better said than done folks. Job said it best that we accept good stuff from God so much better than we accept the not-so-good stuff. Time to start flexing those faith muscles.

Meanwhile, we're in a holding pattern. Apparently, in its infinite bureaucratic wisdom, my insurance company decided not to cover the cost of unrelated donor searches. Peachy. The search for a donor match is on hold while some financial rigmarole gets sorted out (And it will. Don't y'all be fretting about that.).

Until then, I've got nothing but time to stew in my own juices about all this. Not good for a naturally brooding girlie like myself.

But I'm gonna get there. I'm heading for the morning sun.

17 comments:

susan said...

That's very scary [hugs]. I have no doubt that you WILL get there, though, because of your resilient, positive spirit.

You are also a *wonderful* gifted writer-- perhaps you'll use some of the downtime to continue to document your experiences (which are very meaningful to readers who share similar life-paths)... and maybe expand your writing in other places, as well? Just a thought.

Aloha,
Susan

Marissa said...

Amanda, thanks for sharing what you are going through. It has got to be tough to put your fears out there. Your strength is inspiring, and you are going to beat this thing!!

Jeremy said...

I'm sorry to hear about all the crappy shit you're going through, Miss Pink. But you either suck it up and live or you take it lying down and die, and you were brave enough to pick the right one. For the record, you are totally my idol. You're by far the coolest person on the comments at Pajiba, and you're most badass-mother-shut-yo-mouth to ever write a blog. Keep up the good fight, Miss Pink!

litelysalted said...

This sucks. I can't even begin to imagine what you're going through, and I feel frustrated because I wish there was more I could do to help.

We're here for you. All of us. For as long as it takes.

Anonymous said...

I've been following your situation since I found out what was up over at Pajiba, and have almost commented more than once. This post pulled me out to say something. This is something that people have gone through and survived before, yet it is still super mysterious. Yet you've managed to rip the curtain away and put it all out there. I've not met you, but you're regularly in my prayers. I'd imagine you'd rather not have cancer than be lauded as an inspiration, but holy crap, you regularly show how amazingly gracefully and brutally honestly someone can handle a big pile of ick.

- Lollygagger

MelodyLane said...

This is super scary stuff. I have faith that you will get through this and come out on the other side one bad ass mo-fo.

You are a rocking person and I send all kinds of positive thoughts and prayers your way. Whatever you need, let peeps know. The interwebby peeps are here for you.

Miss M said...

Not a day goes by that you, Adrian and little A aren't in my thoughts. I wish I could offer more, but the three of you have all the love, hope and faith that i can muster.
You WILL get through this. There's no use in any of us thinking otherwise.

Love you guys.
Mariah

JamieSmitten said...

Well technically, you don't know for sure that you won't have a super power after all that radiation. It will probably be something that works on zombies.....

Anonymous said...

Gosh, I guess just think how fast time could fly in regular time. I know that probably sounds dumb. But I have great faith that you can do all of this, just by looking at those cute pictures of your son. I'll let you know if I hear anything about my blood thing going on as well - if I hear anything about my person.
Take Care, Carol in Indiana

Julie said...

You are so strong Manda. I am truly in awe of how well you have been handling this suckfest of a situation. I'll be thinking of you, all of my prayers and goodwill are being focused on you. Everyone else can suck it for the time being :p

Chris Stanley said...

Dangit woman! You can't have the simple stuff, nnooooo! You gotta have the industrial strength stuff requiring mechanical, chemical, and radioactive abatement.

Can't you take something cool in with you during your treatments, like a spider? Something that had a unique trait that you could absorb during the radiation process. Maybe a chameleon. Wouldn't it be cool to change colors for camouflage, and shoot blood from your eyes when people piss you off!? (ha,ha,j/k)

You are always in our prayers (Joseph prays for you every night!), and on our minds.
We love you and wish you well!

Chris S

mswas said...

We'll be with you every step of the way. And if you need the MurderTank to get those buggers, you just let us know.

tinksgirl said...

I've also been following your condition since I learned about it on pajiba and pray for you and your family. I have so much admiration for you and I know that doesn't help a whole lot considering what you are facing but so many people are pulling for you and you are having such an impact on people's lives that I just hope it helps a little bit. You really are a very talented writer and I love the way you are so straight forward about your struggles. I will continue praying for you and wish there was more I could do. I believe you will overcome this!!

tania said...

Whew.
You're right, that sucks. I actually don't know what else to say about it. I had no idea what was involved in a BMT and the recovery from one.
But if anyone can do it, you can. Your strength amazes me. One day at a time, Manda, ok? One day at a time....

Boo said...

Ok, now Ms. Manda: This is your marathon. A retraining of your body. Yes, it is going to suck. Yes, the time it takes to get back to normal seems so far away, but God would never have given this to you if you weren't capable of handling it.

You are strong. It takes an incredibly strong person to face this, and here you are, facing it, making jokes, and being vulnerable to the world. Strong strong strong!

As always, here for you ANYTIME, ANYWHERE. I've been donating platelets on your behalf every time the Red Cross calls. Which is a lot, since I have O neg.

Keep that mind afloat with your future, your loves, and everything that makes you feel safe and happy.

All the love and energy I can channel!

Boo

Treena said...

What you're facing is scary as hell, but you can do it. I'm just out the other side of eleven months of cancer treatments (chemo, surgery and rads), and while it was brutal sometimes, it's already starting to fade in my memory. Just keep dreaming about tomorrow, and it will come sooner than you think.

Ranylt said...

"This semi-seclusion will last anywhere from six to nine months."

Thank the Day for the Internet, then. It really is the little things, isn't it?

We're with you in spirit--and in html.

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