Thursday, March 26, 2015

Third day home

I know that I technically came home on Monday, but that was in the middle of the night, so I'm counting this as the third day home.

Status update: I am exhausted.

I may always be this tired the first week I come home, but I swear it's worse... every time.

An example of something that completely wipes me out: getting my own pills in the morning. I have roughly six bottles that I have to open to retrieve my morning meds, one of them is a child-protected prescription. By the time I've opened and closed all of the bottles, my arms are heavy (like I've done a major workout) and I can hardly breathe. I have to sit down to swallow the pills, because the act of getting ready to take the pills takes everything I've got. My blood pressure goes up, the blood leaves my brain, and I feel like I'm going to pass out.

True story.

Even now, at 2:30 in the afternoon, I'm stuck in my recliner. Do I know I'm due for a nap? Yes. Do I know I'd sleep better in my bed? Also, yes. But I feel like my queasy stomach will lose it if I move my body, so I just keep yawning and finding new things to do with the laptop on my lap.

Mouth sores... Can I just tell you how not thrilled I was when I woke up in the middle of the night on Monday (to pee... because it seems all I ever do is pee) to discover that the mouth sores had already set in? I'm taking Acyclovir as a prophylactic (suggested by my primary care doctor) and I'm literally drinking Magic Mouthwash. They haven't gotten any worse in the last three days, and I am grateful for that, but geeze... I usually get 4-5 days of eating before they pop up. Oh, well. Apparently, the side effects really do get worse, the further you get down this road.

Oh! And you can add this fun little tidbit to the tango I do with nausea control/constipation on a daily basis. I found out yesterday -overheard at MD Anderson, when I was there for my Nulasta shot - that my nausea medication of choice (zofran) causes constipation. So, I'm trying to go down on my zofran intake, in hopes that'll help my bowels reset themselves to somewhere near normal. Too bad I'm also still super gaggy from the four days of chemo. I know you have to pick your battles, but frankly, NEITHER of these stomach troubles seem like something I'd be smart to sacrifice.

Anyway... I'm three days in. I feel about the same as I did yesterday, but marginally better than I did on Tuesday. The good news about having done this twice before is that I know I do start to feel better, bit by bit. For now, I'm going to risk the puking and go walk around the pool. And then I'm putting myself straight to bed for an afternoon nap. (You'd think, with having slept a solid 12 hours last night, that I could skip naptime. Uhhhh... not so.)

Monday, March 23, 2015

And that is the answer...

I am home.


After staying an extra five hours for a unit of blood, I am home.

(And those hours? Totally worth it. I had no idea how crappy was feeling until I woke up with that new/extra blood in me. Turns out hemoglobins are a big, freaking, deal.)

And now, I'm out...   

To go home tonight, or not to go home tonight?

I was originally scheduled to go home tonight around 6:30 (that's in one hour, kids). Sadly, it appears that my hemoglobin is a little low, so the discharging doctor is ordering a unit of blood prior to my release.



While I'm quite certain that the blood will ultimately help me feel better faster, I'm still bummed that my stay has been lengthened from 6:30 to 8:30 or 9:00.


Friday, March 20, 2015

Making friends and getting presents

So, I've been here for, what... five hours now? And I've made friends with a hospital  volunteer who LOVES me. (I mean, how could she not?) She keeps going out, then coming back with prizes from the donation box for me.


Here we have: a yellow afghan that's the color of sunshine that reminded her of me, and since I can't be out in the sun, I should have this blanket, a white hat because it's such a prettry pattern, School of Rock, because it's funny and she knows I like music, and two pink hats. 

I'm sorry to say that the dark pink is a little too small for my head, and I think I'm going to have to give it back.

I love people. (Esp when they give me presents. Ha!) It's days like today that  I'm super grateful for my propensity to make strangers into friends, and quickly!

Round III

Here we go again...

I'm at the hospital, typing this as I walk into Admission.

Gulp.

There's something to be said for knowing what's coming. (Sadly, knowing what's coming also makes me want to puke. Oh, welI...)

It's another (lighter than the first time) four day round. At least I have that going for me, right?

Wish me luck!

Thursday, March 19, 2015

Today

Today was just a day. An old school, "Laurie felt good enough to take a walk" day.

It was a good one.

I did the laundry, I lapped my apartment complex (twice, actually), and I drove thru Chick-fil-A and picked myself up a child's meal A and a side salad.

Now I just need to pack my sweet little hospital bag, and I'll be all ready to go to the hospital tomorrow morning.

The last four days have been awesome. I've been almost completely side-effect-free since Monday, and it has been fabulous. I've thoroughly enjoyed being not-dizzy enough that I can walk for 15-20 minutes at a time (some days, like today, more than once). It's been so great to feel well enough that I can drive myself around. I've read a book and a half in between napping and/or marathoning Person of Interest on Amazon. I made cupcakes on Monday, so I could take them to my favorite (CT) nurses on Tuesday.

People, I vacuumed this week.

It's been a good four days. I've felt better than I have in the last six weeks, and it's been... just... well... incredible, actually, to have this little bit of calm before the storm hits again this weekend.

I'm so grateful to know that the chemo is working. I still want to puke, just thinking about having to go back in for more, but it's working. And knowing that it's working will have to be enough right now. Some day (in the not so distant future, I would hope), I like to think that I'll be able to say that it was worth it. I'm not there yet, but for right now... it's working. And, at the end of four very good days, that's enough.

Wednesday, March 18, 2015

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%.

Tuesday, March 17, 2015

It's scan day


Blood work at 10:00 and then I get to start pounding barium immediately thereafter.

I'll get the results tomorrow.

And then, I'm hoping, I'll be able to go back to sleeping through the night. Because, whatever the results show, at least then I'll know what's going on inside of me and I can stop weighing any/all worst possible scenarios in my head.

Sunday, March 15, 2015

Wig Update #1

So...

Yesterday, I had my first skype session with my new friend wig-making friend, Merria. It was super awesome!

Since my laptop is basically a dinosaur and was created before there were cameras installed in computers, and also because I knew I was going to need another body physically present to measure my head, I went over to Jo's for the call.

Jo and Dean and Sally and Maggie and I were glued to the computer screen for almost a solid hour. It was fascinating to get to see a little bit of the backroom in a wig shop. Merria showed us what the inside of the wig looks like, the super fine lace that will line my head, and the mesh that the hair will be tied through - strand by strand. I learned that I will still be able to pull my hair into a low pony, or back in a barrette. (Hooray!) And get this, you only have to wash a wig once every three weeks. Hello! That's even better than my old 5 day rule!

Oh, and Mom... you'll be pleased (albeit very surprised, I am sure) to learn that MY HEAD IS AN AVERAGE SIZE. ... It turns out that it really was my hair that made my head appear so unspeakably large. My noggin actually measures a little on the small side of average. (Who knew?!)

Anyway... the work on the wig will start next week, and it'll take about four weeks to finish.

And the best part?! She'll be instagramming the whole process, so I can see the work as it's taking place.


I totally told her I was screen shotting her every move and would be putting it on my blog. She didn't tell me that wasn't allowed, so... I figure it's alright. Stay tuned for future pics. (It's all just so fascinating to me, and not just because it's my wig. The entire process is so precise. There are so many painstaking details, and yet... it's something that's being created, by an artist who has a vision of what it will look like in the end. It's amazing to me.)

I'm so freaking excited that the wig is actually happening (RIGHT NOW!) that I can't even tell you how happy I am.

Again, many (MANY!) thanks to all the women and children who cut their hair for me. It means more to me than I can say. Thanks for making it possible for me to get my own hair back on my head, because as much hair as I had, it wasn't enough to make a wig on my own. This is something that, literally, never would have/could have happened if I didn't have so many people who loved me enough to give me their hair. Thank you.

Friday, March 13, 2015

I had a dream

Not like Martin Luther King, Jr. (I'm not that cool.)

Rather, it was a dream that I was eating white bread. Rolls, actually. Like, an entire basket of Texas Roadhouse rolls.

It was awesome.

And then I woke up and had a half a pb&j on whole wheat for breakfast with 25 oz of water.

The good news about reality is that I can eat peanut butter again. ... The mouth sores are retreating. Huzzah!