Saturday, January 30, 2016

Side effects

It's always a good time when a girl starts a new chemo regimen. The foray into the unknown is such a fun adventure. (Insert eye roll here.)

I'm at the end of Day 5, and this is what I now know about this new drug:

Worst. Nausea. Ever.

As in E-VER. (Please consider this is coming from the woman who was on anti-nausea meds for months in 2010, aka: the girl who could barely keep down 4 carrots at a time during radiation.) 

Luckily, I have multiple prescriptions for nausea meds, so I'm able to overlap and take something every four hours. But man... the nausea is wicked. It's a force to be reckoned with, and is so strong that it will wake me up from a dead sleep an hour before it's time to take a pill. It's completely insane.

Besides the nausea, I've had this real awesome full body ache thing going on. Like the flu, but 52 times worse, because the aches are combined with all-over fluid retention and swelling that is out of this world. 

At the end of Day 5, I can feel my collarbone again. So, that's movement in the right direction. (My face is still swollen and puffy, and the back of my head looks like a marshmallow... again, with the fluid retention.) But I'm starting to see the swelling recede, and now I can lie on my right side, which gives me an option for sleeping.

Word on the street is that nausea is the #1 side effect for this drug, and that it gets better in the second week, with little to no side effects in the third week. (Please know that I am laughing, even as I type this, seeing as how I'm still seeing side effects from the last chemo in my daily life... and it's been more than a month since my last infusion on that regimen. But whatever.)

Tuesday, January 26, 2016

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.)

Monday, January 25, 2016

Taco Bell/Head Painting

For those of you who don't know... Taco Bell is my meal of choice on the night before I start chemo.


Every round, I've had Taco Bell as my final meal before going in to get back on the juice.

So, tonight, it made the most sense to have Taco Bell, chips and ice cream for dinner at the Woods' house. With Kirk's family. And some head painting. ... Because I am, pretty much, the coolest cancer patient around.


Call it a blank slate, a bald pallete. Whatever you want.

We call it a good time. From youngest to oldest:

Kirk


Russell


Hazel


Monson


Maggie and Hazy


Dad's getting in on the action (and Cili's taking up permanent residence... watch for her in, pretty much, every single picture from here on out through the night... girl got seriously addicted to painting my bald head!)


Dad, me, Hazel, Maggie and Sally


Jo and Kirk, taking turns


Jo takes her head painting VERY seriously! 

(Whereas, I, clearly... do not. I got mocked tonight for my need to smile for EVERY picture. Who doesn't smile when they know their picture is being taken, is what I want to know?!)


Roomie, being hilarious. ... Or, uhm... ruling. (Whatever.)


Cili


Mag


Sally


Judy


Brett


Brett and Kirk both having some good times.


Another one of C and me


I can't believe we didn't get a shot of the other side of my head! (Because, I'm telling you, it was pretty sweet. Complete with a bucket of Blue Bell ice cream, courtesy of Russelbear, and other smiley face, since Jo and Kirk were, apparently, painting the exact same thing at the exact same time.)


It was a good night. I'm full of tacos and Sun Chips and rocky road ice cream. I'm so grateful that Jo and Dean totally let me invite my family over to their house whenever I want, and I love that there's an activity that all of the kids (both those who are actually young, and those who are young at heart) can get into.

The painting of the head is something I sort of stumbled across last spring when Hazel (jokingly, or maybe not...) asked if she could paint my head like an Easter Egg. (I love kids and their crazy imaginations.) Whatever it takes to make the kids okay with the baldness... it's the greatest equalizer ever. Cili, in particular, has always had a hard time with my baldness. (Sally, too. But it's hard for C on a different level.) But tonight, she was the one person who could not get enough of painting the fuzzy head. Two words: Worth it.

Whatever I can do to make the cancer, and the baldness, more fun. Not just for me, but for everyone else in my life.

Friday, January 22, 2016

TV ... and what it does to (and for) me

So, I've been hanging out at home a lot this week, waiting for insurance approval and chemo to get scheduled. It's been a different kind of living than last week. ... Last week, I was out with friends as often as I could be. This week, I've been at home, in bed, with a heating pad on my dang back/rib as much as I possibly could be. This week, I've been in a lot of pain, and I've been really tired. And that's okay, because honestly... I think a lot of why I've hurt so much this week is because I did so much last week. (Also, the chemo is enough out of my system that I don't have competing crappy side effects to distract me from the pain in my back.)

And while I've been at home, when I'm not receiving visitors (with hugs, if they bring me peanut M&M's... hint, hint), I've been watching *Chasing Life on Netflix.

I've been both curious about and afraid of watching this show. It's a show based on a 24 year old who's diagnosed with AML, so it addresses her diagnosis, treatment, struggle with acceptance, etc. It also shows what family and friends of someone who is going through the entire diagnosis to treatment to relapse to treatment, etc., roller coaster may be experiencing.

Like I said, I've been both curious and afraid. ... And, in watching it, true to form, I've struggled with some legit PTSD tied to my own battle with the dang cancer. (Don't worry about how I literally broke down in hysterical sobs in the season one finale when she picked up a mallet and started pounding on the drywall in anger. I've never wished for physical strength more than I did in that moment. ... And  then I had a wave of gratitude wash over me for my brother, Kirk, and how he took me shooting this summer/fall and let me kill old TV's with his 22. I may not be strong enough to swing a mallet, but I can shoot the crap out of TV screens. And that's something!)

And while this show isn't incredibly well written (there are some real inconsistencies and serious plot holes), I've also been relieved and grateful to see that there's a show that's covering the very mixed emotions that not only cancer patients run through, but also how living with cancer can affect the people on the periphery of the fight. Because it's not just the cancer patients whose lives are turned upside down and inside out, it's everyone who loves us... especially those close enough to the nucleus that the diagnosis and treatment (and the emotional fallout of both) directly impacts their quality of life. (Caregivers and other inner circle family and friends, I'm talking to you.)

I think it's been good for me to watch a drama that's centered entirely around a young adult who is facing a cancer diagnosis and an uncertain future. While she was 24 at initial diagnosis, and I was 35 (not technically a "young adult" anymore), there have been a lot of life changes and hard cycles portrayed in this show that I've really related to. It's been interesting to spend a week buried in cancer as entertainment, on one of the few weeks I've had in the last couple months when I'm not buried in fighting it. I've laughed and I've cried, and I've cursed this blessed disease... and I've been grateful for my life, for the way that cancer has played out for me.

Bottom line, it's been a hard show to watch, but it's also created opportunities to reflect on my own experiences, and that's been good for me. Here are a few of the realizations I have had while I've been Netflix binging this week:

Holy crap, I'm so grateful for my own diagnosis, and my own situation. I'm so glad that I was 35 when I was diagnosed, and that my treatment choices have always  (and obviously) been my own. I'm so glad that I was, seriously, a full-fledged adult when this shit storm hit my life, and that (outside of an unfortunate experience after my first surgery, when my surgeon and father got a little too chummy and my dad got some information before medical staff had told me how my path report read) my medical life has always been mine. I'm so glad that I have Judy, that she understands me and my needs well enough to be there for me, but not to hover, and that both of my parents have always known and respected that my surgical and treatment choices are mine.

I was 40 when chemotherapy made me sterile, not in a relationship and not, in any way, planning a family. And the appointment in which I was told that infertility was one of the certain side effects of my first treatment plan is still, hands down, the worst doctor appointment I've ever sat through. (And listen, I've sat through some doozies.) Like cancer didn't already take enough through surgeries and treatment plans. Like it didn't turn the tables upside down and make everything go sideways in my mid-30's. Like I don't already wonder if  I'll have the chance to grow up and grow old like a normal person... Taking the (granted, very remote) possibility of ever having my own children off the table in one, fell, swoop was cruel. ... And, just like that, again,  I'm grateful that I was 35 when the cancer storm hit, and 40 before chemo, and not in the prime of my life, where I could have lost that hope when there was still a possibility of having the family I grew up assuming I'd have. (I don't know how young adults with cancer do it. I really don't. My heart aches for them.)

Steve. Oh, good gravy. I'm so grateful for Steve that I have a hard time finding words. He has been the most tremendous help to me in the last few months. The timing in which he came into my life, who he is and what he has done for me (physically and emotionally), is nothing short of miraculous to me. He's the biggest blessing that I absolutely did not see coming, and I'm grateful every day that he walked right into my life and wants to be part of my story. He's amazing.

Having to stay strong for other people, or the perception that I have to remain strong (and upbeat, positive, happy, funny, cheerful, etc...) for others, is so difficult. Which doesn't mean that I'm not naturally those things, or that I don't want to be all of those things (for myself and for the people who love me). But man alive... it's wicked hard some days. And, often, I wish people could see that, could understand that the last thing in the world I want or need is to be praised for how ... any and/or all of those things I am. Because I am also scared, and mad, and... unsettled about all of this, and those feelings matter, too.

Cancer humor is a real thing. I was raised by a woman who learned to laugh in the face of cancer when her baby sister was diagnosed in her early 20's, so I grew up with a special brand of caustic humor pointed directly at this disease. To me, sick jokes about cancer are freaking hilarious. But, at the same time, there's this weird honor code that says the only people who can make them are the people whose lives have been directly impacted by the disease. Other cancer patients crack me the hell up. My mom and her sisters, and so many of my cousins, make me laugh out loud. (I still cackle when I remember Rachel telling a story ("she died" was the punchline) when we were at the baking retreat in October. ... It's so sick, but it's also so true.) It's an unusual thing, to be sure, but it's a coping mechanism that so many of us have in common. I don't have an official, traditional, meet-every-Tuesday-sit-in-a-circle-and-share-your-experiences-and-then-stand-around-and-talk-while-you-drink-punch-and-eat-donuts-afterwards support group, but I have a tremendous number of amazing people who have been so supportive over the last few months/years. And there are enough of them that have fought this fight that we have the ability to both commiserate and laugh together. I'm so grateful for those people who have helped me get through this, by making (and letting) me laugh.

Having a hard time planning for a future that is, currently, uncertain feels... impossible at times. And it's weird, because I used to be such a planner. And on some levels, I still am, because I like to know what I have coming up the next day or week. But now, I have a hard time planning outside of a six week time period. Like, I know that I'll start chemo next week. And that'll take the next six weeks to run through. And then I'll go to Houston, and then... maybe that next weekend I can go see my friend Monica and her new baby, before I start the next two cycles? But I can't plan past that. Like, there's a blockage in my brain. I have to know what my scan says, because that will determine if I have another six weeks of what Trabectedin or... and that's where my brain literally stops, because while I have a rational awareness that Doxorubicin may be the next drug in my arsenal, it was so horrible last year that I can't even think about a future that that drug is a part of. ... And I hate that. I hate that I feel stuck, or like my time is limited, almost all of the time. I still love my life, I'm still grateful for every day that I have. (I may not be grateful for every moment, or every hour. But every morning, I'm glad I have another day. And every night, I write down what I did that day, and I am so grateful for the opportunity to do... whatever I did.) It's weird. I can live in the moment. And in most moments, I feel alive and like almost anything is possible. But I have a hard time knowing how to plan my future anymore. ... And this show has helped me recognize that it's not like my brain is broken and that's why it works this way now - that it's part of my diagnosis, that it's part of living with cancer. And that in some weird way, not being able to plan a future has helped me appreciate the current in a way that I didn't... last year, or even last month. It's a weird paradox, but my inability to see six months down the road has made each day richer, better, more full and happier than my days were six months ago.

In short, I'm grateful for the last week of days spent in bed, watching TV. This show was a kind of therapy for me. I've always liked to read books or watch movies that make me think, and this was a different approach that got my brain going.

It's been good for me to have a mirror, of sorts, held up in front of me. Some of the symptoms and scenarios were very familiar, while some of them were... so far removed from my reality that they were obviously fiction. At the end of the series, I am grateful for the reminders of what is hard, because I was also reminded what is good. Cancer is super hard, and I wouldn't wish it on my worst enemy. It seriously sucks. But it's also seriously awesome, in that it's true, what they say... you don't really live until you know you're dying.

* Please note that this post is not a product (erm... TV show) endorsement, per se. It's not actually something I'd recommend to a lot of people, because I don't know how relate-able the cancer drama is, and... frankly, the family drama is a little bit over the top and out there, which makes the show less believable/likeable. That said, I've enjoyed it, and would love to talk (or text) with any of you who've caught it. Let me know what you think. ... And, if you're close enough to the nucleus to have felt the heat of the blast, either with me or with someone else, let me know if you think the friends/family/support staff roles are on point. I'm honestly curious about how well they nailed those characters.

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.

Sunday, January 17, 2016

The last week

I'm sitting here on my couch on a Sunday night, and I can't help but think... I've lived a lifetime in the last seven days.

That's the thing about being in the in-between, time drags. And it flies. And, somehow, seven days can feel like seven months. It's crazy.

On Tuesday, we walked out of Dr. H's office and sat in the waiting room (because I was too weak/tired/overwhelmed with my options to stand), so I could fill Steve in on some of the Homsi history, and he looked at me and said, "Having to delay a few days might not be the worst thing ever. You need some time off chemo."

Uhm, yeah. I did need some time off. ... I'm still tired, and my rib hurts like crazy, and I'm just awake enough to have an awareness of how bad the chemo brain really is (I seriously couldn't think of people's names at church today... scary), but man, it's been great to have another week off. (The week to go to Houston and back hardly even counts. Beyond the travel, I had a cold, and that made me miserable. This week was way better.)

Here's some of the stuff I did this week:

Had a "light" (I say that totally tongue in cheek) lunch with Steve on Monday. Mmmm... Logan's.

Went to the movies (The Peanuts Movie) and DQ with the Wood family.

Ate at Chili's. Twice. (Listen, they have wings now. And that creamy jalapeno sauce is awesome!)

Ran into work for a good 30 min, maybe 45. (And then I brought stuff home. It's not like I'm totally unproductive.)

Discovered that my mouth can tolerate the bubbles in soda again. Viva la Dr. Pepper! (I went to Fiiz with Judy and got not one, but two, 32 oz Diet DP's with coconut and cream. My total favorite!)

Spent three hours with Jo (and approx 20 min with a peanut butter and hot fudge sundae) at DQ, kidless! (That's right, DQ twice, in one week. I am the luckiest girl in the world!)

Ate Panda Express and Taco Bell and Carl's Jr. Goooooood times! (I know. I'm a 41 yr old woman who loves fast food. But seriously, it's SO good!)

The Cheesecake Factory. Chopped salad with blue cheese dressing and lemon raspberry cheesecake. It was a practically perfect day!

Kneader's turkey, bacon and avocado salad. And soup. And raspberry cream pie.

Had Ben & Jerry's for the first time since... I honestly can't remember. (My tummy doesn't love it, but my mouth does.)

I went to church. For the first time since I started chemo. .... In November. (It's funny, how much I don't love to get up and go to church on Sundays until it's a choice that I cannot make. I have missed those people, and the music, and the reason to wear a pretty dress.)

Not everything about this week was awesome. But you know what? Not everything was awful, either. The this-or-that chemo riddle was about the most frustrating thing ever. (For real. As much as I do appreciate Homsi thinking outside the box and tossing another option into the ring, honestly. That about killed me.) But it was seriously so great to spend time with people that I haven't been able to just hang out with in months. It has been fabulous to get out of my house, and go out and feel like a normal person for a few days.

Currently, I'm scheduled to go in for chemo on Friday. Which is noooooot as soon as I'd like to get that started, but what with the holiday weekend, and the fact that the pharmacist had to order the meds, since it's such a new drug and they don't have much occasion to use it, Friday is the tentative date. It's possible that they can get me in sooner, once the insurance approval comes in. But it's not for sure. As much as it makes me nervous that that'll be almost three full weeks off the juice, I mean... let's get real. It's not like what I was on before was doing anything. So, I'll take another five days of feeling semi-human.

I didn't get a whole lot of pics of the good times last week, but here are a few.

This is Jude and me at Fiiz. Please note that this was Wednesday night and I had the patchy bald thing going on. (Honestly, I hadn't ever realized how bad the patches were until I posted a pic to fb that night and then saw it enlarged on the laptop screen. Man alive, that was bad news bears!)


So... I shaved it off Thursday morning, in an effort to make myself look like less of a weirdo.

Just in time to have a conversation with Zarzour that afternoon, which led to me deciding to go with Trabectedin for my next couple rounds. Which, ironically, does not cause hair loss.

So, now I'm shaved bald and am about to start a chemo regimen that wouldn't have made me lose the few wonky hairs that I had left. Oh well, at least now, when it comes back, it'll all be same length. (And I have this sweet, domed, head for a few days. Wahoo!)


At Dairy Queen with Jo's girls Saturday afternoon. (I tried to take a selfie with all of the girls AND Rook, but my arm, frankly, isn't long enough to cram six people into the frame. They were all lousy. So, what I have is this pic that Jo took with her phone and then texted me.)


Last week was hard. But it was also awesome. Emotionally, I was all over the place... and sometimes straight up off the chart. 

But I got to see Gimbel and Amanda for a second when I was at MDA on Tuesday. And I got to talk to my cousin Greg (he helped translate the PET verbiage, since neither oncologist had made that top priority). And I got to see a movie in the theater, and go out to eat a bunch of times. And Charla and Wyndie came over and chatted for hours, and Katie Harris came to visit me. I was able to spend hours this past week with girlfriends, and I haven't been able to just hang out and chat like that in months. Judy and I got to spend an entire day together when I was feeling good. Dad came down to pick Jude up for their anniversary weekend, and we got to hang out for a few hours. I got to see my work friends. I had two real, actual, out-of-my-house dates with Steve. And I stayed up past midnight one day this week, like a normal grownup.

Life is hard. I mean, really... REALLY... hard sometimes. And the last few weeks/months have (okay, the last year has) been pretty special. But I'm grateful for all of the living I was able to cram into the last week while I have been waiting for the next phase to begin.

Life is hard, but it is also awesome. And I'm really glad that I have people in my life who want eat wings and cheesecake and ice cream with me for as long as I can.

Friday, January 15, 2016

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.

Wednesday, January 13, 2016

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.)

Tuesday, January 12, 2016

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.

Friday, January 8, 2016

Scan Week

Yesterday was Scan Day, today is Results Day, and while I'm waiting for my docs to confer and hand me down the final word on what awaits me, treatment-wise, next week, I thought I may as well throw out some Show & Tell pics from the week.

Usually, we stay at The Rotary House  (MDA's on site hotel), but my appt dates got changed two weeks out, and they are, very much, at a full to capacity status. Sooooo... I did a little digging  (that's a lie, an email came right into my inbox on the very day that I realized we'd need a different hotel) and found that we could stay at the Wyndham for about $10 less a night than our other "cheap" Houston hotel. Done! And while these digs aren't quite as upscale as their website would have us believe them to be, the beds are awesome and the pillows are fabulous  (so much so that Judy was stripping the pillows so she could get to the tags to find out what these pillows are made of, and if/where she could buy some... I kid you not)

The view from the 12th floor is nothing short of amazing. We're in the heart of the medical plaza, so there are hospitals as far as the eye can see.


And it's even better at sunset (don't mind my reflection in the window that I was trying to take a pic out of).


This is the view to the left of our room. Hospitals and hotels, ad nauseum.


This is the view to the right of our room. Total (very upscale) residential neighborhood.


Houston is so funny. There are no zoning laws here, so you'll see houses in the middle of industrial parks and gas stations smack between million dollar homes. It's kind of crazy, but I'm getting used to it.

This morning, we met with Dr. Z, and she gave us the results of yesterday's PET/CT. It wasn't what we were hoping for, kids.

Which is to say, it's grown. Not by a whole lot  (approx 1/2 a cm in one place and almost 2 cm in another), but it's grown. And it's  gone up one point on the SUV scale.

Here's a b&w from the CT pics, showing the changes in the amorphous mass in/around my small and large intestines. (11/9/15 on top, 1/8/16 on bottom)



And here's a full color (PET) pic showing that the spot on my rib has gotten just a little bit bigger and angrier. (11/9/15 on top, 1/8/16 on bottom)

There's also a small hot spot under my bowels. It was hot there in November too  (this Nov slide doesn't show it, but there was a teardrop shaped spot on that scan). Could be another tumor, could be that mass moving from well-diff to de-diff, could be that I needed to poop. Your guess is as good as mine (or any qualified medical professional).


Sooooo... not what any one was hoping for. It's minimal growth, but it's enough that it counts. (The biggest change registers at just over 25%, so it's enough that it's classified as growth. Had it been 20% or under, it would have just been a blip on the radar. Ugh.)

Treatment options:

Stay with what I've been doing for two more rounds (there's an outside chance, but still a possibility, that the growth happened in the two weeks between the November scan and starting chemo). I've tolerated this regimen fairly well, and two more rounds would either show that it IS working (after getting a late start in Nov), or it would concretely show that these meds don't work with my body.

Try the new drug that the FDA just approved at the end of October. (I don't have the name of it at the tip of my tongue. If it really matters to you, ask Google. Either way, if we go this route, I'll know the name by the time I write another post.) Possible hitches are that the drug isn't available everywhere yet. Dr. Z put a call in to Dr. H while I was in her office. He wasn't available, so she left a message for him and assured me that after they had talked, she'd call me back.

If Banner can't get the drug in Az, I could fly to Texas every three weeks to get it. ... Or we'd go back to option one to see if maybe it'll stop progression of we give it more time.

Obviously, neither of these are awesome options. But they both beat the hell out of my third option, which is to go back on a version of doxyrubicin/andromancin (the red devil). That drug, and its wicked side effects, are, hands down, the hardest thing I've ever done in my life (and, people, there have been A LOT of hard things). If it comes down to that being all I have left, I'll do it. But I just can't willingly sign my body up for more of the drug that was so brutal that it almost killed my spirit.

Right now, I'm... eating a lot of chololate.



And it may be the most expensive part of this "vacation". Seriously, $2 a pkg for peanut M&M's is highway robbery, but since this is my drug of choice when my life goes sideways, and hard, I don't even care about the price of hotel snacks right now.

But really, I'm holding steady, just waiting for my doctors to talk it over and determine which is the best course of action for now. I'm okay with either option 1 or 2, truly. This current regimen either didn't work because it doesn't work, or it's not showing that it worked because of the timing. Doing another two rounds will tell the tale. I'd love to try option 2. It's the first chemo to get FDA approval, specific to liposarcoma. (Granted, it's technically specific to mixoid liposarcoma, but they've seen some success with de-diff liposarcoma, so I'll chance it.)

As soon as I know which way the wind is blowing, I'll post again.

As always, many thanks (and so much love) to those of you who keep me and my tumor troubles in your hearts and prayers. I can't tell you what it means to me, to have so many people aware of what is happening in my guts. I love you so much, and I am so grateful. Thanks for saying prayers that,  I am certain, have lengthened me life. And thanks for making sure I always know there's a reason to keep living. Ya'll are the very best!

Wednesday, January 6, 2016

So far, so good

It's January 6th. I'm sitting at the airport, waiting to board my (nonstop, thankyouverymuch) flight to Houston. Tomorrow is scan day. Friday, I'll get the results. (I'm crossing all of my fingers and toes that it's working, for a myriad of reasons, not the least of which is that this chemo's mouth sores don't start in my throat and go down and through my entire digestive tract.)

It's the 6th. And I've done a ton of stuff already this year. 

New Year's Eve, I slept in my house by myself, like a real grown up. After 40 days and 40 nights of sleepovers with Jude, I was finally well enough that we could both take a little break. Wahoo! 

New Years Day, I had a TV marathon party with my sister and our friends Jane, Michael and Rafael. Oh, and tamales. TV and tamales. That's a good day! 

Saturday, I went to brunch with some girls from home. Best gluten-free adventure ever! (Jewels Nakery, Phoenix Az)


Saturday afternoon, I spent some more quality time with my seester. Talking, laughing, crying. Followed by one of my favorite dinners at one of my favorite places (Waldorf salad @ CPK).


Sunday morning was spent with Steve, Sunday afternoon was spent on my couch, and Sunday dinner at Jo's was about the best spaghetti I've ever had.

Monday brought a lot more couch time. (I try to be productive, I really do. But even when I feel "good", I'm tired and the most ridiculous things wind me.) Monday evening, I learned a very difficult  (but important) life lesson: I can't eat chips and salsa while I'm in a treatment cycle. (It was Dat 21, so I thought I'd be safe. Not so. My stomach doesn't want to kill me anymore, but my feet and hands are still swollen from sodium overload.) But at least we got a pic taken before the food sent me running home.


Tuesday was breakfast with Steve (I may have to break up with Village Inn. Not because their food was crappy. Please. Their hash browns are always awesome! Sadly, I had to use the facilities while I was there. It was horrifying. A mix of my memories of the pink girls' room at Taylor Elementary and every grotesque bathroom I've ever seen murdered (on TV) in a public restroom.) And then I saw my cancer shrink and acupuncturist and then Judy and I went to the movies with Jo and Roomie.

And now I'm sitting on a plane. Front row. 



The perks of being able to play the cancer card. I was in a wheelchair all the way up to the gate, and now I have front row seating, so my feet can be up for the flight. Fingers crossed that'll be enough to keep my little piggies from swelling so much that I can't walk into Papa'so BBQ once we get to Houston, because this girl is craving a loaded baked potato, Texas style.





Monday, January 4, 2016

I cried the day the palm trees came down

Not really. Mostly because today is Day 21, so I'm not riding the Crazy Emotional Chemo Train today. (I actually just used that title because I like to mock The Forgotten Carols a little bit sometimes.)

But I am really kind of sad. (And I'll probably cry about it later. Right now, I'm sort of in shock.)

I woke up this morning to the sound of chainsaws running. "That's weird", I thought, "Friday is Landscaping Day. I wonder what in the crap they're chopping down now." I opened my blinds and saw... the palm trees. They were all down.


All five of them. The pool looks so naked. And there are ugly tree stumps everywhere.

My apartment complex has new owners, which means we're under new management and have new landscapers. And while I'm sure that the end result will be better than what we've had... I'm really gonna miss the raggedy palm that I used to be able to see from my bed.