Saturday, May 23, 2015

Houston, we have a problem...

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

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

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

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

The tumor isn't shrinking.

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

- Deep breath. -

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

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

Because I don't want to be done.

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

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

Friday, May 22, 2015

Wig Update #6

It's done!

Merria emailed and texted Tuesday to let me know the wig was done, and to ask if I'd like her to root it (put lowlights in) before she sent it out.

As much as I really wanted to honor the natural color of the sweet girls and wonderful women who had donated to the cause... and as curious as I've been as to whether it's true that blonds have more fun... I just couldn't imagine myself sporting hair that's so light.

So, I asked her to keep it another day or two and work her magic. And work some magic, she did! These pics of the finished product came in this morning.

Isn't it beautiful?! (And look how long it is!) I love it!

She's shipping it today. The next time you see a pic of this wig, it will be on ME!

Thursday, May 21, 2015

A day in the life of a bald girl

I was running low on hummus and flat out of avocados here at Casa de Cancer Girl, so I made a Walmart run this afternoon. Don't worry about how I used no less than seven of those antibacterial wipes they provide to decontaminate the shopping cart before I went into the store. (Mostly because chemo has brought out the OCD in me in a way that was heretofore unimaginable, but also because when I tried to pull just one wipe, seven came out in a string.)

I made my way through the aisles:

Ensure (because it qualifies as a legitimate snack/meal in my current world, and the dark chocolate kind is NOT disgusting). Check.

More fake eyelashes (because now that my real lashes are gone, I am all over gluing fake ones on - every day). Check.

Toilet paper and Kleenex with lotion (because one can NEVER have too much of either of these things). Check.

White wheat flour, in case I ever want to make baked goods again. Check.

And then I moseyed on over to the produce aisle, where I swear I bought three of everything. (Except lettuce. Because, I swear to you, if I ever eat salad again, it will be too soon.)

As I was standing over the avocados, I had a clear view of the people walking into the store. So, I watched them. It has been interesting to me to gauge the reactions of people when I'm out in public without anything covering my head. Children generally stare and then smile or start giggling. (I love how honest kids' reactions are to the baldness!) Adults' reactions can usually be split into three different camps: the look away and then look back and then stare off into the distance (rinse and repeat... ad nauseum), the quick glance and then hard stare at anything that's not affixed to the top of my shoulders, and those who look straight into my eyes and smile. (I like the smilers the best, in case you were wondering.)

Watching the incoming traffic for a few moments, I clocked a few looky-loos, a handful of hardcore avoiders, and couple smilers. Grinning from ear to ear (human behavior fascinates me, and one of my favorite things about being bald has been the social experiment of seeing how people react to it), I went back to picking avocados out of the bin. As my head went down, I saw one of the smilers walk past me and into produce section to the right of me. He made it about 15 feet past me, and then, out of the corner of my eye I saw him stop walking. He stopped, turned, and came back towards me, asking, "Ma'am, can I give you a hug?"

Of course I said yes, but I'll be honest and say that I went into that hug wondering if and/or why he'd felt impressed to approach me, a perfect stranger with one hell of a space bubble, and ask for a hug in the middle of the produce section. But as soon as he touched me, I knew it wasn't about me. His arms went around me, and his face went into my neck. Both his shoulders and his voice shook as he held me close and told me about his mom.

Lung cancer. Stage four. She's been gone almost a year, and he misses her every day.

We stood like that for maybe five minutes while he talked about his mom. Then the grown man who had let himself fall apart in public put himself back together again and pulled away. He thanked me, wished me well and told me to keep fighting. I thanked him back, told him I was so sorry for his loss, and assured him that I have every intention of keeping up my end of this fight. And then he walked away.

I don't know his name. He didn't ask mine. Names didn't matter. Heartache and a shared experience of having cancer rip our lives apart bound us together in a way that introductions and small talk never could have.

As much as I miss my hair, I am grateful for the time that I have had without it. I have both seen and been seen differently as a bald girl. Today, I am grateful that I was in the right place, at the right time, with an obvious tell to the battle I am fighting. I never would have imagined that my bald head would be the impetus for making such an unusual, yet strong, connection with someone I had never met, and am unlikely to ever see again.

Cancer sucks, but people don't. And I love that both the universe and the people of the world keep reminding me that people are awesome, and that we have - and share - experiences in mortality for a reason.

Monday, May 18, 2015

Scan Day

Today was scan day.

It was also the day in which I had Taco Bell for breakfast and Target popcorn for dinner. (So what if I'm a stress eater? Don't judge.)

Tomorrow, I'll get the results and the plan for the next phase in Plan Kill Tumor #9.

More details to follow. (You know, when I have some details...)

Wednesday, May 13, 2015

Wig Update #5

It's almost done!

Aaaaaaaaand, it's pretty blonde.

(I'm trying to come to terms with the blonde-ness, actually.)

There's just the front left on that one side, and then it'll be finished!

The best part?

The hair is wavy/curly!

The earlier pics I'd seen looked like straight hair, and I had wondered how in the world all that curly hair had been tamed. Good news, it hasn't been! (It just looked straight because it had been oiled to put moisture back in the hairs. ... I know this, because I asked.)

The wig should be done and in the mail to me by Saturday. Which means... this time next week, I'll have my hair (and the hair of my friends and family) in my hot little hands!

Wednesday, May 6, 2015

May 6th

Today was supposed to be the first day of round five.

It wasn't, though.

Instead, it was the day I was able to walk for 15 minutes in the sunshine and feel the breeze on my face, on my bald little head, and in my ears. (One of the weirdest things about losing my hair has been learning how sensitive my ears are. Ha!)

Today, I was able to walk outside AND take a shower in my own bathroom AND clip my toenails with a nail clipper like a normal person. (When I'm in a chemo cycle, the clipping of nails is forbidden, because of the increased risk of infection if my skin is accidentally cut. So, I've been filing my toenails for the last three months. That's right, I've been FILING MY TOENAILS. It's been real awesome. But today, I got to cut them. Halle-freakin-lujah!) And now, I'm going to sleep in my own bed.

I'm so grateful. I still have some aches and pains and the mouth sores on the left side of my mouth still have a presence, but I was out of bed almost all day today. I was able to walk. I took a shower and put on real clothes, and I'm hopeful that tomorrow I'll have enough umph to paint my newly trimmed nails.

Today started and ended (and middled, too) very differently than I'd expected it to. I'm nowhere near what is ACTUALLY normal, but I'm a lot closer than I was even 48 hours ago. Life is good.

Tuesday, May 5, 2015

I went to the doctor, and the doctor said

No more monkeys jumping on the bed!

Just kidding. That is NOT what he said. ... Sometimes I just can't help but quote children's songs/rhymes.

What he actually said was:

You look good!


If this is how you are when you were determined not to be emotional, I have to wonder what you'd be like if you'd planned on coming in here to cry. (Dr. H doesnt love it when I cry. In fact, I'd go so far as to say he hates it.)

Oh, and:

Let's not start round five this week. Let's give you a couple weeks to get things under control and get to feeling better. 

The official verdict is that I'm not currently strong/well enough to go in for another round. My blood is better (much better, actually... many thanks to all ya'll who've been praying that I'd feel better), but I am still very tired and light headed.

So, I'll be taking the next two weeks off chemo. There's a CT scheduled for the 18th. I'll get the results and the next piece of the game plane on the 19th.

I'm totally good with this. That last round totally took me for a ride (and not in a good way). It will be nice to have some time to eat some normal food (10 days of mouth sores have had me drinking a lot of spinach and Ensure shakes, it will be nice to spend some time with semi-solids again). I'm especially glad that the scan will still be this month - that pushing the start of round five won't also push the scan. I feel like this is a win, all the way around.

Friday, May 1, 2015

Eight days later

And (finally) my geography has changed. This is my current view. (Don't mind the clutter on my table, okay?)

For the first time since Thursday of last week, I was out of bed and in the living room first thing this morning. (Keep in mind that I sleep until around 9:00, so "first thing" isn't something that happens as the sun comes up.)

Today, I am grateful that I can sit in my recliner. (I flipping love this chair.) And I'm super grateful for the friends that I have, for the friends that I have always had, in my life.

Jo popped in around 10:00 this morning and stayed until she had to go get her girls from school. Shortly after she left, I received a fb email from one of my friends from ye olden days in Provo. (Ben Matthews, for those BYU 3rd warders who would recognize the name.) A few minutes ago, I was scrolling through fb and read a quote that my seminary teacher, Evan Bingham, had written in response to some comments mutual friends had made on a post he did today.

"Truly Elder Maxwell hit it right when he said, 'Recall the new star that announced the birth at Bethlehem? It was in its precise orbit long before it so shone. We are likewise placed in human orbits to illuminate. Divine correlation functions not only in the cosmos, but on this planet, too.' Elder Neal A. Maxwell, October 2002"

My mind immediately flew back in time twenty years to a conversation I had with my friend Olettie Colettie (aka: Noodlehead, aka: Colette Bird, nee Bright), in which she shared a thought from a BYU devotional she'd attended that week (paraphrased, because I don't know the source), that those people who have eternal influence on our lives are the same people who always have and who always will have eternal influence on our spirits.

I'm so grateful for all of the amazing people I've known in my life. I have more good and happy memories than, I am sure, is my fair share. The Lord has been very, very good to me, in that He has placed wonderful, supportive, funny, artistic, thoughtful, brave and kind people in my path. I wouldn't be who I am without all the friends I've had - so many of whom I still have - in my life.

I am, pretty much, the luckiest girl in the world.

Tuesday, April 28, 2015

Wig Update #4

You guys! Remember when I did the last wig update and I included the picture of the reddish colored wig and said I knew it probably wasnt mine, but I was fantasizing that it was and that Merria had tagged mskillerdiller in error when she meant to tag ms_muffett on Instagram?

Well, guess what... She didn't tag mskillerdiller in error. She tagged mskillerdiller because mskillerdiller's the person who's been doing the back of my head! 

Also, THE REDDISH HAIR APPEARS TO BE MINE! (Funny what happens when you mix several people's hair together.)

What a lovely surprise it was to get a wig update this afternoon.

It's been a hard day, but the wig always puts a smile on my face. (Also, I am pleased to report that I'm feeling a little better this afternoon than I was this morning. For example, I was able to stand at the kitchen counter and drink my entire lunch - chocolate Ensure and a raspberry yogurt blended into a shake - without having to take a break to lie down. I know it doesn't sound like much - either the standing or the "shake" - but I'm telling you, after this morning, I'll count standing for 5 minutes to down something that even remotely approaches a meal made of chocolate as a win.)

Six days

Remember how, last Thursday, I wrote a blog post from my bed? ... Yup. I'm still here.

I was out of bed (and dressed in actual clothes instead of pajamas) for about two hours yesterday, so I could head over to MD and have my blood tested.

It turns out that I'm anemic, my white cell and platelet count have tanked, and my iron and phosphorus and potassium levels are also low.

Yeah, so... my blood is bad. No wonder I'm so tired.

Because the levels are right where they should be able to be corrected through diet, I'm not going in for an infusion this week. This is both comforting (nothing grosses me out like seeing a bag of blood hanging on an IV pole does) and incredibly frustrating (I literally cannot eat more than I'm eating, and I am really conscious of what I DO eat - spinach every day, and a meal of black beans on a wheat tortilla has become a staple around here, Judy looks at iron counts as much as fiber counts on everything she buys at the store). I'm trying really hard not to put anything into my body that won't help it get stronger and feel better, but I'm fighting this insidious drug that's determined to tear not just my body, but also my blood, to shreds.

It's exhausting. And I'm not just saying that because I am anemic and EVERYTHING is exhausting.

There are food groups that are high in iron (steak... pork chops... even chicken) that I would love to be able to eat and spike that iron count... but I'd have to be able to digest it. And my digestive system currently struggles with toast.

And don't get me started on the week of mouth sores, and how that impacts both my options and ability to eat actual food.

(I read last night that having low iron can make a person more irritable. Ya think? ... This post is something special.)

I'm just a little tired of feeling like I'm gonna fall down every time I try to get up.

This morning, I ate scrambled eggs in bed, lying on my side. Judy had to get the last two fork fulls for me because I couldn't navigate the fork against the food any more. I don't know how she's taking care of me without bursting into tears. It appears that she is not only a saint, but also a rock.

This thing (cancer, chemo, low blood counts, digestive issues, constipation and/or the exact opposite of said constipation, you name it... any of it, all of it) is not for the feint of heart.

I'm so grateful that I have my mom here with me. It's hard enough when I have someone else to do my laundry and wash my dishes - oh, and feed me the last two bites of scrambled eggs because I can't lift the fork. I have no idea how I'd be able to do this without her. (That said, I have absolutely no clue how anyone does this when there are other people they have to take care of. My hat is off to all the men and women out there who are both parents and cancer patients.) 

Chemo is hard. Really hard. And I hate it. ... But I live in hope that it's not just killing this tumor, but also changing my body, so the cancer will never come back.