Trabectedin, Round I

Okay, so... totally unrelated to chemo, but look who I ran into again in the halls of MDA! It's Gimbel and Amanda! Best surgical team, EVER! I did the math today, and... four years, three surgeries, five tumors (of nine, so Gimble holds the title for majority of tumors pulled), one kidney, one spleen, 5 cm of diaghram, I-don't-even-know-how-many-feet-of-bowel-reconstruction, one MASSIVE hernia repair, and one stragegically placed port (placed low, so I could still wear shirts with wider necklines... I get claustrophobic in high necks, and I get gaggy when I can see a port that's placed right on a collarbone, so dude did me a solid and put that puppy in low).

Gimbel is The Man! I so love him and Amanda. I love them for saving my life, for sure. But I love them even more for always treating me like a person. I've heard so many "Surgeon/God Complex" horror stories, but I'm so glad to say... I've never experienced that. Ever. With any of my surgical staff. I looooooove them!

For those of you who know how to read a blood work, report... Yes, I started chemo with low a low red blood cell count. But don't worry, when I pointed that out, I was told, "It's barely low for a normal person, and it's not "oncology" low." True story. (Love me some oncology nurses.)

What do I love? 

Acupuncture treatments DURING chemo. 

That red needle in between my eyes? It's to help with anxiety. And I am here to tell you... IT WORKS. I took an ativan at 7:00 this morning. Aaaaaaaand... that's it. I haven't felt remotely itchy or obsessive since acupuncture. (And I'm here to tell you, I had some major concerns about this 24 hour chemo drip before I got stuck. Say what you will about acupuncture being hippy dippy and weird, it has saved me. In so many ways!) I loooooooove acupuncture! 

Please allow me to introduce you to my little friend. 

This is Handy Mandy, the Chemo Clutch.

(Yup, I named her. Because I name all of the things.)

She's full of poison and has a mind of her own, so don't try to do anything off schedule or she'll screech at you. (True story.) We have a love/hate (mostly hate) thing going, but I'll be happy to upgrade that to a for sure LOVE in six weeks, if science can prove to me that packing around my own chemo in a harness-like contraption that's a combination of purse, fanny pack, backpack, and... not fashion forward in the very least... has kicked this (these?) tumor (tumors?) trash.

Remember how I had a hotel reserved for tonight, so Judy and I could stay close to the hospital and I wouldn't have to have a sleepover with the chemo in my actual house? Welllll... let's go ahead and downgrade that hotel-with-an-H to a motel-with-an-M. Fast. And let me tell you straight up that, upon arriving on the scene of the motel, I decided my life was worth more than whatever peace of mind that I thought I was buying myself with that $75 room. Luckily, their cancellation policy let me have through 6:00 PM (on the supposed night of the stay... that should have been Clue #1) to bail. So... call made to the motel, followed by website visited and online cancellation requested, and then follow up/confirmation of cancellation phone call was made to corporate, since the motel mgmnt couldn't confirm cancellation. (Methinks local management really wanted to sell at least three rooms tonight. Sadly, they're not gonna break two.)

And then I brought the chemo home for an overnight. It's really not so bad. (Don't worry about how I ran through over 3 hours just sitting at MDA, because I had to make sure I knew all of the sounds of the pump, and had to make sure I couldn't taste or smell the chemo, etc.)

This would be my **port access.

Please pause and take a look at the butterfly clip. 

Sort of cute. Also, sort of gross, since butterflies are, at best, worms with wings, and this little girl is hovering over a one inch needle, but whatev.

Now, let's pause to thank my surgical team for throwing my port down so far that it's almost like it's not even there. I won't lie, it's a little tricky to access sometimes, because it's not right against bone like they usually are, but Gimbel did a good job in burying it so I rarely see it when I'm fully clothed. God bless that man!

So, the port access is right at my t-shirt line, and then the tubing has been fed down through my shirt, so it exits right at the bottom of the shirt. This is how much I can see between my shirt and Handy Mandy. 

Not super grotesque. I can handle a couple feet of clear tubing, with a clear liquid running through it.

And this is what Handy Mandy looks like on the inside.

Slightly more grotesque. (I love the zipper that keeps all of her poison where I can't see it!)

Sort of like a bomb. ...*Maybe.

The chemo sits on one side. I'd show you the bag of gross, but... it's gross. Plus it's already strapped in, and I'm not running the risk of taking it out and then not being able to get it back in at the right angle. (Mandy would scream about that. I promise.) And the pump sits on the other side, keeping track of how much poison has been pushed, and how much is left to go.

The real beauty of Handy Mandy the Chemo Clutch is that she, A) holds the bag of poison, so I don't have to actually see it in its full grossness, but also B) the pump is held in such a way that I don't have to actually unzip Mandy to get the low down. There's a handy little velcro window that I can open to see how many ml's are left, and/or see what error message is running across, should something go wrong with the plan and Mandy starts getting vocal.

All in all, it seems that this 24 infusion/chemo sleepover isn't the worst thing ever. (That said, the sun just went down and I'm only 8 hours in. I'm pretty notorious for my night time freakouts, so anything's possible. But... so far, so good.) I think it'll be okay.

*I only know what bombs look like from watching TV. So sue me if I've seen that episode of Blue Bloods with the dirty bombs in NYC so many times that now I think all things that are black and have wires attached look like bombs. No judging.

*Yeah, they used my port instead of IVing my arm. Halle-FREAKIN-lujah! Texas had told me that the port isn't in stable tissue, so I'd need an IV for outpatient chemo. Interestingly enough, Arizona says that a port is a bazillion times (or, "much") more stable than an IV. So, port. Thank heaven! (Don't worry about how I keep talking myself off the ledge that something's going to go wrong with the theory that Mandy will scream bloody murder of she tries to pump chemo in and my line doesn't immediately move it through. Deep breaths.)

Breaking news

Chemo's been moved from today to next Monday. The reason for this is the 24 infusion, that has to be outpatient. (Gag me with a spoon. Because the one thing that I dread more than having to have overnights in the hospital for chemo EVER AGAIN, AS LONG AS I LIVE is BRINGING CHEMO HOME WITH ME FOR A SLEEPOVER.) I'd asked if they could run it inpatient, to avoid the trauma of having a chemo bag either in or hung near my bed, but the manufacturer recommendation is to administer the drug outpatient. Which means that, unless there's another reason to admit me (and sky high anxiety doesn't count... trust me, I asked), the cancer center/hospital won't get reimbursed for the drug by my insurance company of they don't follow the recommendation to a T.

So, I'm doing a 24 infusion. Outpatient. With an IV in my arm, because the port isn't "stable enough" to do in-home chemo. .... The good times keep rolling.

And Homsi knows me well enough to know the anxiety I have about... uhm... all things needle. That, plus the fact that I'll have to return 24 hours later to have the pump removed, just moved me from a Friday start (where I'd have to go to the hospital over the weekend for both needle removal on Saturday and the Neulasta shot on Sunday) to Tuesday  (where both set-up and take-down of the IV and chemo bag will take place at the cancer center, and the shot 24 hours later, will be done by staff who knows me).

It's not a perfect situation, but it got rid of my hospital anxiety. And it bought me another weekend, chemo-free. (Not that I have the energy to go anywhere or do anything weekend-specific, fun-wise. But it's five more days without the harsh side effects that come of being IN a cycle, so I'll take it.)

I've been asked if I'm freaked about yet another chemo delay. And, I won't lie. Sort of, I am. Tuesday will be three weeks, aka 21 days, aka one full chemo cycle missed since my last treatment ended. And yes, that wigs me out on some levels. The time of chemo missed could skew the results of my next scan, because that tumor is really likely to have growth in that three week period. But... the reality is that I did two rounds of treatment with a regimen that didn't work, and it's been two months since that failed attempt started. (And, let's get real. I was seriously thinking about doing two more rounds of that, just to officially rule it out as an option.) Given that perspective, five days without drugs really isn't that big of a deal.

And the time off gives me time. To think. To eat more Taco Bell. To spend time with the kids in my life, when I feel good enough to do crazy things like having another head painting party. (Be looking forward to pics of that!) To eat wings and drink soda and binge on popcorn and peanut M&M's. To sit and talk with friends, to (hopefully) finish one of my projects at the bank.

Five days isn't a big deal, but it also sorta is. And I'm choosing to think about all the stuff I can do and enjoy over a long weekend, rather than focus on what could be happening inside of me that five more days on chemo may have been able to affect.

There has been a calm in the storm

Kids, I have a treatment plan. Trabectedin (Yondelis is its other name). It's the soft tissue tumor drug (specifically designed to work on myxoid liposarcoma - liposarcoma with tumors originating in the leg - but has shown some success with de-diff retroperitoneal liposarcoma as well) that was just approved by the FDA in October, 2015.

What I love about it: I'm getting a drug that was created for my cancer. I mean, I'm actually sort of giddy about that. I feel like a breast cancer patient, with a drug that was created for MY cancer! (Which sounds like maybe I'm not honoring the difficulty of a breast cancer diagnosis, or the treatment thereof. That is absolutely not my intent. I hate all of the kinds of cancer. Any diagnosis, all treatments are incredibly difficult. I mean, it's just a seriously crappy diagnosis to live with. And as if the disease itself isn't bad enough... the cure can just about kill a person.)

I'm just so grateful that there is finally ONE drug that is specific ONE form of liposarcoma, that is was approved last year, and is available to me now. This is one trial that I won't have to worry about getting accepted into, because it's already been approved. Such a blessing.

What I don't love about it: It's a 24 hour infusion. Which means that I'm either going to have to go back to the hospital for a sleepover to get my chemo OR they're going to have to strap a bag of chemo to me and I'll have to bring the poison into my own home/bed for an overnight. Both of these thoughts are horrifying to me, though I would err on the side of inpatient, for about 1,000 reasons, not the least of which is that my hospital anxiety is just a titch lighter than my bringing-home-a-bag-of-chemo-with-an-IV-in-my-arm-because-the-port-isn't-deemed-stable-enough-to-deliver-the-drug-without-around-the-clock-care anxiety.

Deep breath. (Let's all pray for an insurance approval for inpatient chemo, so I don't have to go through a normal person's entire week's worth of Ativan in one 24 hour period.)

I also don't love that it, well... has an approximate 10% effectiveness rating.

But listen, I read the study that Homsi gave me on the Gemcitabine+Dacarbazine, and it was 12%. So, it's not like I'm selling myself down the river with that 10% chance. ... And all I have to be is in the 10%. (With everything else that's weird and freaky about my case, it could well turn out that I'm not in the 90th percentile.) Fingers crossed.

I don't have a start date yet. Texas has to write sample orders and get them to Homsi, then the pharmacist has to order the drug (it's so new, and this cancer is so rare, that it's not in stock), and my insurance needs to pre-approve the meds (oh, right... and a hospital sleepover) before scheduling can call and let me know when they'll get me in. I'm hoping to get through the weekend, and start up again on Monday or Tuesday of next week. When I have that start date, and an answer as to inpatient v. outpatient, I'll for sure let you know.

It's, basically, hurricane season over here...

Yeah, the wind is still blowing.

I didn't hear back from Texas today, so I sent a lovely, *long-winded, including all possible questions I can think of today (with a disclaimer that there may be more tomorrow, when she calls back) email to Zarzour today.

*No pun intended. (Ever.)

I totally get that she has a bunch of other patients and the days are long and busy. I get it. I, also, have a job and totally know how time can get away from a person. And, while this is my life to me, it's... not that to her. And that's okay. Because no one else's mortgage has ever been my mortgage, and I've totally forgotten/neglected to return a call in the same business day.

But still. I seriously cannot make a decision about what to do next without knowing if this is an instance of her not having thought of this drug combination as a possible for me, or if she meant did think of it and maybe even mentioned it in passing, but didn't write it down on the card with the other treatment options... or if it's something she didn't suggest, because she hasn't seen it work on liposarcoma.

Now, I will say that I read through the Phase II trial report tonight, and they did include 9 liposarcoma patients in the trial. (12% effective rate) So, maybe she's seen it work. (And one can only hope that the Phase III saw this work at least 13% of the time...)

That said, I'm telling you straight up... you guys, don't read through trial reports. Esp if you have a rare cancer and want to think you have a chance in hell of beating it. That wasn't light or fun reading. At all.

And now, I'm even more itchy for a conversation to either green light this drug or put a full stop to this possibility. I need to get my sick body back on chemo, post haste, and not knowing if this is a viable option is currently holding me back.

Also, I'm officially out of peanut M&M's. Here's hoping I can make it through the night. (Double dose of Ativan, coming right up.)

The wind is still blowing

Remember how I said I'd post again once I knew which way the wind was blowing? Well... I don't actually know which way it's going yet, but it is kicking up a storm, so here's an update.

I saw Dr. H this morning. He advised that he had talked to Texas about treatment plans, but said she didn't really recommend anything specific, that it was a lot of, "You could do this, or you could do that." He came out of the conversation confused and frustrated, because he was expecting direction, and all he heard were options. He asked if that's how she'd been with me, too.

I relayed that she had been a little bit like that with me, but it was because I had a total freakout on her when she suggested that it was time to go back to the Doxirubicin (Adrimycin, "red devil" - all the same diff) regimen. She knew I'd had a bad experience with that drug, but didn't realized that it would cause me to have a high-speed-come-apart, just talking about going back on that chemo. (Cancer treatment PTSD. It's a real thing, people. ... And I hope you never have to know what I'm talking about, because it is hell on wheels.) But I just can't even think about going on that drug again without knowing that I've exhausted every other possible avenue. So, as I told Homsi today, that is when she started sort of thinking out loud with what options I had (keep doing what I've been doing, maybe try the Trabectedin... but only if I could get access to it in Arizona). We talked, long-term, about how she'd change the way the delivered the hard chemo, to see if she could decrease the likelihood of the mucositis happening again. (Look up that word if you're feeling real brave. Then know that mine was so bad that I was landed in bed for weeks, unable to move, because the sores and swelling lining my entire digestive tract was so bad that I couldn't even roll over in bed without searing pain. And don't even get me started on having to poop...)

The point being, when Zarzour initially talked to me, she had a recommended treatment option (on no level did I think she was up in the air or all over the place), until she realized that just talking about her recommended treatment plan was enough to send me to an early, anxiety-induced, grave. And that's when she gave me options.

I explained this to Homsi, which I think (I hope) helped him feel better about Zarzour not having been specific in her conversation with him. He asked me what I wanted to do. I told him that I had thought about it and would prefer doing another two rounds of the Gemcitabine/Docetaxel over going straight to the Trabectadin, with the thought process that it would either show stabilization in my next round OR it wouldn't, and that would prove that it doesn't work for me and I could effectively cross that chemo combo off my list of possibilities.

Homsi wasn't... in love with this idea. He's quite certain that the tumor growth has been over the last six weeks (read: not in the two weeks between the scan and starting chemo), and that doing another round of the same thing would not be a wise use of time. Not that he thinks I'm dying RIGHT NOW and time is of the essence or anything. Quite the contrary, both he and Zarzour have said that I'm actually pretty stable in the progression of the disease and now is the time to try to lighter/easier chemos. Homsi went so far as to say today that there is so much gray in my case, that it's hard to treat, because there is no one obvious course of action that has to be taken right now.

That said, he recommended a possible fourth treatment option. Staying with the Gemcitabine as a binder, but adding Dacarbazine (getting rid of the Docetaxel). It would be a 14 day cycle, instead of 21. So, the cycles would be shorter (this is both good and bad), but it would be going in for chemo just once every 14 days instead of twice in a 21 day cycle. He's given this combination to many patients (and gave me some medical journals as light reading as support), and has seen success with his own patients. I asked if he'd seen success with liposarcoma in particular, and he told me he hadn't used it on liposarcoma yet, but assured me that he had seen success with other soft tissue sarcoma patients.

So... now we have a fourth option in the running. I need a day or two to think about it (and I would like Texas to give me some input). As much as I'm happy to hear that there's another drug that has seen success with with sarcoma patients... I'd really like to hear that someone has had personal experience with treating a liposarcoma patient before I sign up for this.

Hopefully, I'll hear back from Zarzour soon (like, maybe she'll call from home tonight, or first thing tomorrow morning? ... when I dream, I dream big), so I can get another medical voice chiming in.

I am grateful for the time off chemo. I'm really tired, but I'm thinking more clearly and I have less pain now that I don't have current chemo in my system, causing swelling and shooting pains in my extremities. At the same time, every day I go without getting back on a treatment plan is a day that there isn't anything that's even maybe holding these damn tumors at bay, and that's making me a little bit crazy. I know that I can only control what I can control, and doing research and reading up on another chemo is the part I can control. ... It's just that sometimes I wish I didn't have such a weirdie case of what is already a rare cancer. There are no easy cancers, and there is no treatment plan that is a good time, but some days I wish my body had gone the route of 1 million other people, and I had a cancer that was easier to treat. My kingdom for a pat chemotherapy plan, is what I'm saying. I'd love nothing more than to walk into a doctor's office and be handed a standard treatment plan. But alas, that is not to be. I get to wander the CandyLand of Cancer Treatments; right now, I am bogged down in the Molasses Swamp, but I'm really hopeful that someday soon (tomorrow, maybe?), I'll get a shortcut pass through Gumdrop Mountain. Only time will tell.

In the meanwhile, at least I have peanut M&M's to stress eat while I remind myself to take deep breaths.

Six months

Six months ago, on May 18th, I sat in Dr. H's office and he dropped the 3-6 months bomb on me.

Aaaaaaaaaand, turns out his timeline was pretty right on, as far as me not being able to live more than six months without major medical intervention.

I was in Houston last week for tests, and... this bad boy is growing like a weed. The hot spot in my back has roughly doubled in the two months between scans, and I have another spot in the front that is showed hot on last week's pet. We're not sure if that's a new tumor growing among my bowels, or if that's an indicator that the previously well-differentiated mass in/around my bowels is now progressing to de-differentiated. (As much as we all know that I do love buying myself a fancy purse for every tumor, my fingers are crossed that this isn't a new little dude. I'm hopeful that it's the mass progressing to de-diff, because that means chemo may be able to impact what is generally referred to as "the amorphous mass" on my medical reports.)

Anyhoo, the long and short of it is... It appears that my body is out to kill me again. So, I'm going back on chemo next week. (Yes, it's crappy to start chemo the week of Thanksgiving, but listen. If it'll save my life, I'll give up a pecan pie and some potatoes and gravy.)

Dr. Z gave me some options. I'll show them to you, for the medical people out there.

I'll do another post on another day that goes into more detail on the treatment plan I chose to go with (#1), but the long and short of it is that it'll be outpatient this time. Different drugs, with a different treatment plan = a different way to deliver the meds. Instead of living on the cancer floor at the hospital for a week out of every month, I'll be hooked up to an IV pole in the infusion center for about 3 hours twice a month. Just as before, the plan is two rounds of chemo then a scan to make sure it's working, then two more rounds and a scan, ad nauseum, until it stops working and then we'll go to a different chemo blend.

I've had a lot of people reach out this week, wondering what's going on and how I'm doing, because I haven't been posting as often. Well... this is what's going on. And I'm alright.

I am tired, but I'm alright. In many ways, I'm grateful for the timeline that was handed me six very short months ago, because it helped me realize, on a deeper level, how important it is to truly LIVE every day. I have had bad days, for sure, but there have been so many more good than bad. I've been able to go back to work (only part time, but it's been such a blessing to have something I can do with my time that yields measurable results), I've been able to travel and spend time with friends and family. I can't eat all of the delicious foods in the world, but I have loved the crap out being able to eat like a semi-normal human again.

I have been living and loving. Every day. For six months. I may not have written much about it, but that's because being out there, doing all of the things, took so much energy that I didn't have anything left to write with.  Maybe next week, when I'm tied to a recliner in the infusion center, I'll start going through the pics in my phone and I'll catch ya'll back up. (Big. Fat. Maybe.)

In the meantime, let the record show that I made it six months. And I'm so very glad that I did.

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".

Gulp.

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.

It's results day

This morning, when I was getting dressed, I reached for my polka dot top and my black skirt. On a whim, I threw my red felt hat on my head (I'd previously been thinking of wearing pink). I took a quick look in the mirror, then decided I was sassy enough that the outfit justified wearing my black peep wedges.

I walked out the door on the way to my appointment, thinking, "Nothing too terrible can happen on a day that I'm wearing this hat and these shoes!"

And it turns out that I was right!

The results came in, and.... drum roll, please... Tumor #9 is shrinking. Halle-freakin-lujah!

He didn't go down as much as Dr. H was hoping he would (don't ask me what the good doctor's expectations were... he wouldn't tell me), but the tumor did shrink by *approximately 15%.

Which, I will take. Considering my scans this winter were showing approximately 20% growth every six weeks, the fact that two rounds of chemo not only stopped the tumor's growth, but also shrunk the size by 15%, is a serious win.

The plan for now is to do another two rounds, and then do another scan six weeks from now to see what changes have occurred. (Many people have asked and I honestly don't have an answer for, ultimately, how many rounds of chemo I'll do. As long as the tumor is still there, but shrinking, my understanding is that we'll continue on the same path. If the tumor stops shrinking, we'll move to an undisclosed Plan B. ... One of the many joys in having a rare cancer? Having a treatment plan tailored to my body's whims. Good thing I have an oncologist who's a sarcoma specialist, eh?)

Round III will start Friday. As in, in two days. 

I won't lie, my body's reaction to knowing we have another round right around the corner is to tighten up every muscle in my stomach in preparation for a serious puke-fest. But my mind's reaction is, "Now that I know it's working, I can do this." (And, as we all know, I pride myself on letting my brain overrule my body.) When it comes down to the ugly, nitty-gritty, stuff in life, as long as I can wrap my head around it, I am all in. ... And, right now, I'm so happy to know that the chemo is working that I'm more than willing to subject my body to at least two more rounds.

Gulp.

So, there you have it. The tumor is shrinking. Chemo is continuing. And I'm loving modern medicine, even if (when) it makes me want to curl up in a ball and die.

*This is an approximation. Dr. H did the math half in his head and half on his phone, muttering about how I always want to know percentages, the whole time through. Since I always want to share my info with "the whole world" (his words), he wanted to make sure I understood that the number may be closer to 14. Or maybe 16. I asked him if I was approved to use the wording "approximately 15%", and he conceded that, as long as I threw the word "approximate" in there, I had his approval to "tell the whole world" that the tumor had 15% shrinkage. So, there you have it. My tumor shrunk by approximately 15%.

No chemo for Laurie: the pros and cons.

Here's the scoop. I met with my oncologist today and found out that I will not be going through chemo this time around. I know, I know... a collective YAY was just heard around the world. But here's the thing - this is a mixed blessing. It's a very, very, very good thing, in that I won't be THAT kind of sick. I won't lose my hair or puke my guts up all day long for weeks. (Yay!) But it's a bit of a bummer, because the reason I won't be doing chemo is that it just isn't effective on the type of cancer/tumor that I grow. (Boo!) Studies they've done on cancer patients with liposarcoma show mixed results after chemo treatments, and my doctor isn't willing to put me through chemo on the off chance that it might prevent recurrence. I'm incredibly grateful for a doctor who cares about who I am too much to put me through treatments that would ravage my body just to see if chemo "might" work. At the same time, it's hard to know that chemo is a weapon that I don't have in my arsenal. It's one of the most well-known cancer treatments, and it just won't work for me. That's hard. And frustrating. (Because, frankly, all I can think right now is that six weeks of radiation the first time around didn't stop it from coming back. And now chemo's off the table, too?) It's frustrating to me that my body went and created such a random and little-known tumor/cancer (twice) that they don't know what to do with it.

As grateful as I am that I will not have to go through chemo and the horror that those treatments are, this is a real and scary and hard thing I'm living with right now. I'm being as positive as I humanly can be, and I like to think that I'm doing a fairly decent job of it. It's hard to balance hope with reality. And yet, I have faith that someone, somewhere, will know that there's something I can do (or take) to give my body a leg up in not only recovery, but in ensuring my body's receiving the best post-op care it can, so I'm never in this position again.

At the end of the day - at the end of this very hard, emotional day - I am hopeful. My doctor referred me to a clinical trial/research facility in North Scottsdale. He thinks they may have some new medication there that would be beneficial, and I'm willing to try anything - esp if there's a specialist there who may know something that my general oncologist doesn't, just because of the rareness of what I have. (And how much better would it be if that specialist were single, in his mid-late 30's and looking for a wife who is a cancer survivor? ... I'm just saying that I'd like both a cure and someone who'd pay the bills around here. If we could please kill two birds with one stone, that would work for me.)

As always, stay tuned to Cancer Central for future updates. You know I'll give you the info as soon as I have it.