Saturday, May 23, 2015

Houston, we have a problem...

Monday of this week was scan day. Tuesday morning, I got the results. Aaaaaaaaand... it isn't pretty. (Thus, the delay in releasing the info.) 

I was really hopeful that I'd have answers to maybe a third of my  own questions (currently estimated at 3,294) by the end of the week, but it turns out that an unusual medical condition plus the middle/end of the week before a three day weekend does not equal timeliness in returning phone calls and scheduling all the appointments this particular cancer patient wanted to have made before she needed to dump this info on the www.

That said, I've been getting a lot of questions... because the information hasn't been out there.

So, here I am, relaying what it is that I know right now.

The tumor isn't shrinking.

After four hellacious months of chemotherapy treatments, it's physically painful for me to say, but I'll say it again: the tumor isn't shrinking.

There were some changes to the shape and size of #9, which indicates that the tumor is in an active growth cycle (which is what we would need for the chemo to be effective), but for whatever reason, the chemo is no longer having a shrinking effect on the size of the tumor. Four rounds in, and per my beloved Dr. H, "we're not going to hit a home run with this one".


So, what does that mean? Well... I'm not really sure. (Remember the estimated 3,294 questions? Roughly 2,862 of them are very tightly wound around the following.) I was presented with three (sort of four) options on Tuesday:

1) Continue doing chemo, with the hope that it would inhibit further growth. So, basically, stay on the super awesome drip system I've been rocking since February... only now, we'd be abandoning the hope of annihilating the tumor and would, instead, be doing it with the hope that the tumor would stay the same size. 

I don't feel like this is a great quality of life option. The chemo side effects have been wicked, and unlike anything else I have ever experienced. And - here's the kicker - my health deteriorated with each subsequent round, because I was carrying around residual chemo in my system that just kept getting added upon. I can't imagine how I could possibly feel any worse than I did after round four, but I am certain that continuing treatments with these medications at these doses would completely break my (already beaten and bruised) body.

2) Try targeted radiation. Again, with the hope that it would inhibit further growth. There would be a possibility of tumor shrinkage with this option, and a certainty of wrecking my bowels.

I don't feel like this is a great quality of life option. As a woman who went through six weeks of radiation treatments in 2010, I can attest that radiation treatments - at least in your abdominal area - have lasting effects. (Basically, what I'm telling you is that my bowels are already wrecked.) I shudder to think that my digestive system could get any worse than it already is, and I worry about high radiation levels in my sad little body increasing the odds of developing a different kind of cancer somewhere else.

3) Surgery. With the caveat that Dr. G, the blessed surgeon who has saved my life multiple times, doesn't really like the thought of operating on me. This tumor is nestled between my small and large intestines and the placement of the tumor has him concerned about how much of the surrounding tissue he'd have to take out with the tumor to ensure a clean margin. To quote Dr. H (who was, I am sure, quoting Dr. G), "he doesn't know that there will be enough left to put you back together again".

I don't feel like this is a great quality of (mental) life option. (Hi. Can you say the words "colostomy bag"? Because I can't. ... Have we ever had a conversation about how I feel about fluids and hoses and not literally carrying my poop around with me everywhere I go? Because, if we haven't, maybe we should.) And coming out of surgery with a colostomy bag is very likely the best case scenario with surgery. (Insert a visual image of me shuddering in horror that this is the best case scenario.) There are inherent risks with any surgery, and this would be another big, organ-removing procedure. It would be huge, and life changing, assuming my body is strong/well enough to make it through the surgery itself.

And here's the real kicker (and the words that have been running around, wreaking havoc in my head for the last 84 hours) - if we don't do something to stop, shrink or remove this tumor, it will get big enough to cause bowel blockages that could kill me... in 3-6 months.

So, I basically have three crappy options that I hate... and a fairly tight timeline that we're working against.

Which is where option four comes sliding in as a (possible, pending insurance approval) second opinion from the sarcoma team at the MD Anderson campus in Houston, Texas.

While I have been so incredibly fortunate (blessed, really... on so many levels) to have a sarcoma specialist here at the MD Anderson in Gilbert, he is only one man working in a relatively young facility with limited resources. Going to Texas would/could open up options for different treatment plans, because there would be fresh eyes - and more pairs of them - looking at me and my special tumor-making body. 

In short, Houston will either give me more options or they'll confirm that the options I have been presented with here really are the cards I have to play. 

Which means, I'm choosing door #4. Because I don't ever want to wonder  - and I don't want anyone who loves to me to have to wonder, either - if there was an option outside of 1-3.

So now, I wait. For the phone calls to be returned, and for the insurance approval to come in. And then I'll book a flight to Texas and we'll see what they have to say.

- Deep breath. -

This hasn't been my favorite week ever, but I'm hopeful. 

I'm hopeful that my insurance company will pick up the out-of-state care. I'm hopeful that someone in Texas will have seen liposarcoma do this before and they'll know what to do with #9. I'm hopeful that there will be a treatment or surgical option available there that will turn this around. I'm hopeful that Houston will be the last stop in trying to find a solution/cure for what has been wrong with my body for the last five years.

Because I don't want to be done.

I love cake and bacon and butter and chocolate and life too much to want to be done at the age of 40. It's too soon. I want more.

So, I'm going to go to Houston next month. And I'm going pretend that it's a vacation (because everything's more fun when you call it an adventure ) while I pray that it's the answer.


Melissa said...

I am also going to Houston next month! Go figure! B & I are flying in to meet up with some friends. I will make sure someone comes to visit you while you are there, if at all possible! <3

Catherine said...

I'm praying with you! Love you, Laurie!

Genevra said...

I love you Laurie. I'm praying for you and adding my hope to yours.

Crowwyng said...

I love you, Let me know if they decide you need a nurse to travel and insurance won't cover a MD Anderson one.

Jenni said...


Evvie Turley said...

Door #4 will no doubt be the best one to venture through. I'm praying with you. Look out, Houston, here comes Laurie!

Jennifer May said...

Laurie, I'm real close to Houston. If you need a place to stay, rides, visits, whatever, let me know.

Jennifer May said...

Laurie, I'm real close to Houston. If you need a place to stay, rides, visits, whatever, please let me know. 936-689-1166