Sunday, May 31, 2015

Me & my mini

One of my favorite memories of sweet Hazel was the first time I went to Kirk's, bald. It was the weekend in April that I had a chemo break, and I'd gone there for dinner... forgetting to grab a hat or a scarf before I ran out the door. I walked into Kirk's house, through the front room and into the kitchen, and Hazel grabbed me by the hand and asked if I wanted to go with her to take Cinnamon outside to go potty. No sooner had we gotten outside, then she put her hand on my arm and looked up at me and said, "Don't worry, Aunt Laurie. I'm already used to it. You still look like you to me." 

When the wig came in this week, and I had dinner plans at Kirk's again, I took it with me to show it off. And Hazy wanted to wear my hair.

She looks pretty good wearing my hair, right? Who's kidding who? She is always adorable. Love that girl!

Daytrip to Flagstaff

When the wig came in on Wednesday, one of my first texts was to my brother, Brett, telling him that we needed to get together and having a redhead pic taken together with his little girl. I mean, now that there are three redheads in our family... it needed to be documented on film. Obviously.

Friday morning, as I was waiting for my doctor appointment, I sent a flurry of texts to my three Arizona brothers to make sure the timing would work for everyone to get together the next day, and... hallelujah, it did.

And thus, the ultimate daytrip/roadtrip was born.

Kirk and I got together around 11:00 yesterday morning, grabbed a quick lunch at Chicka-fil-A (no one loves fried chicken like we do!) and then hit the road. We rolled into Flag around 3:00 (don't even get me started on the one hour pit stop we had on the way when I pulled off to get gas and it took us half an hour just to get close enough to a gas pump to have my debit card denied) and hung out at the park with B&K while Tyler worked the rest of his shift.

Karen was a real trooper and chased Natalie around the park while Brett, Kirk and I sat on the grass and talked about growing up in Taylor, eating casseroles every night (we compared favorites/least favorites - ha!), picking oranges to make fresh-squeezed juice at our California grandparents' house, Grandma cooking a quarter into her chocolate cherry cakes (whoever got the piece with the coin in it got a prize - Brett got $5 once), Uncle Jimmy's gorilla mask and everything else under the sun.

The weather was perfect. The conversation was excellent. The grass was REAL GRASS (not something we see a lot of in The Valley of the Sun). We laughed. Hard. 

It was awesome.

We left the park around 5:30, dropped Brett off at The Lumberyard to get us a table, and went back to the house to grab Tyler (he got off work at 6:00) and then met back up for dinner. Over dinner, we discussed who makes the best ribs (Charleston's, hands down... according to Kirk and me, anyway), laughed at memories, had some photos taken and may or may not have (read: definitely did) cry a little about my uncertain future.

Dinner was good. Conversation was great. Sibling bonding was excellent.

And then Kirk and I drove home. We got back to my place around 11:00.

It was a marathon of a day, and I've been paying for it all day long... but it was 12 solid hours of awesome that made today's aches and pains totally worth it.

I'm so glad that I'm well enough to travel (even if it does sort of put me in a body bag to have to sit still, and in the same position, for hours in the car). I'm so grateful that Kirk's schedule was such that he could come with to keep me company and be my backup driver. I'm so happy that I was able to see the little boys before I head to Texas. I will always treasure the memories we made yesterday.

Brett, Natalie and me at the park. Sweet little girl was less than enthused at the thought of holding still to be in a redhead pic with us, but we still love her. 

She may not have loved to sit still and look at a camera, but what does love is to swing. High. 

That girl is fearless. She's only 17 months old, and she was constantly walking off, trying to make friends with big kids (I'm talking 8 year olds) and a GIANT dog that another family had brought to the park. It's amazing to me, how early kids' personalities start to emerge, and this little one will be a force to be reckoned with. I was so impressed with how brave she is, and how she wouldn't let anything or anyone get in her way of doing what she wanted to do. 

Four out of six siblings together for a meal with less than 24 hours planning. Not bad.

All we were missing was Katie and Spencer. (Photo cred goes to Karen. She was a real champ about taking pics at dinner. Love that girl!)

It may have taken my sweet little niece some time to warm up to her aunt who was bald, and then had hair, and then was bald again, but by the end of the night, we were buddies. 

I love the sweet little babies/kids in my life, but I'm not physically strong enough to hold them when they wiggle or fight me. I'd been holding Natalie after we tried to get a better "redhead pic", but she got too wiggly, so I had to give her back to her dad. She reached her arms out to me as soon as she landed back in  Brett's lap, so I looked her in the eye and told her that I really wanted to hold her, but I couldn't hold her if she wasn't still. She came right back to me, straddled my hips, put her arms around mine, and settled her head on my chest. Within ten minutes, she was out.

Sleeping babies are one of the Lord's tender mercies, and holding that sweet little girl while she slept was one of the best parts of my day/week/month.  

I needed to have a pic taken with Tyler and his long hair with me and my bald head. He's been growing his hair out for four years, but it's the first time in his life that his hair's been longer than mine. 

Tidy told me that he thinks his hair's grown three inches in the last four months. I told him that was because my hair stopped growing four months ago, and the universe had assigned my typical inch-a-month hairgrowth to him.

(Don't mind that I'm showing my religion in this pic and the one above. I was too busy holding that sleeping baby to have an awareness that anything was amiss with my sleeves. Ha!)

For those of you who don't know, Kirk's been making me laugh OUT LOUD for over 30 years by opening his eyes as wide as he can. (Which, as I'm sure you can see, is not all that wide. That's why it's so awesome.) Feel free to laugh at both of us in this pic. We crack our own selves up. Hard.

And that's what we look like in real life - smiling until our eyes almost close. 

Kirk's been my little buddy since he was born. By the time I was ten and he was five, we were inseparable. Before his voice changed, our mom couldn't tell us apart if we were talking/laughing in another room (even now, he has the same laugh as Judy and me, just in a lower, more bass-ish range). I am the typical oldest child, and he's the classic middle, but the two of us are more alike than we are different. Getting to spend the day (and most of the night) together in the car was so great.

Yesterday was awesome - on every level. Those are my favorite days.

Friday, May 29, 2015

Public Enemy #1

This morning, I had a question and answer session with Dr. G. 

That's right. I scheduled an appointment so I could get some information straight from the horse's mouth. Because as much as I do love Dr. H's impressions of Dr. G, there are some things a girl needs to talk to her surgeon about in person.

Case in point: When I told him that H had told me he didn't want to operate "because he wasn't sure there would be enough left to put me back together again", G rolled his eyes, laughed and said, "Yeah, I can see where you'd need some clarification on that".

So, he clarified it for me. It's not pretty, and I'll get to that. But FIRST, I have to show you what he showed me. See that down there? That is my guts. Also, #9.

I really wish I had a cool program on my computer (like Paint... I looooove Paint!) so I could circle the tumor for you, but I don't have a cool program on my computer, so I'll just tell you to look at the right side of the picture. (The picture's right is my body's left, because the scan was taken from the top down.) See that gray mass that's roughly where my left kidney would be if I still had one? That's the tumor.

It's not little.

(For scale, look left. See the organ to the left of my spine that looks like a giant C? That's my right kidney.)

Mind you, it's also not as huge as this picture makes it out to be. This is just one frame of a moving picture, so it's the angle that's making it out to be bigger than a kidney here. But still, it's grotesque.

And it's wound itself around maybe three feet of my small intestine.

*Deep breath*

Now, I just asked my friend Google, and he told me that the small intestine is generally about 20 feet long. So, maybe three feet isn't such a big deal. Buuuuut, maybe it is. (And Dr. G is guessing it's around three feet that are impacted. He can't be certain how much of the organ he'd have to take unless he opens me up... just to look, and that alone would be risky with my body.) He clarified that he was quite certain that he'd be able to "put me back together again" (literally, he knows that he could put me back together again) - his concern is more along the lines of not knowing if there would be enough of my small intestine left for it to be able to deliver the nutrients to my body that I would need to... you know... live.

Here is what I learned today:

The large intestine and the colon are the same thing. These are interchangeable terms for the same organ. ... I had no idea! (All you medical people are shaking your heads at me right now. It's okay. I don't mind.) And I could easily live without my large intestine/colon. I mean... I'd have to carry around my poop in a bag, but I could live a fairly normal life without it.

The small intestine... that's a little (read: a lot) harder to live without. It's possible. (Sort of.) But  if there wasn't enough of it left post-op (an adult body needs 140 cm of the small intestine to have enough absorption to service the body), I'd have to get all my nutrition from an IV. (That's horrifying.)

There is such a thing as a small intestine transplant, but I'm not a good candidate. ... Because of the cancer. (Shoot. Me. Now.) And not because my history with cancer would keep me off a transplant list, necessarily, but more because the immunosuppresant drugs could cause/allow the cancer to spread. (I don't really know how that would happen. I'm just telling you what he told me.)

This is a lot of new information to process.

He gave me a list of questions to ask any surgeons I meet in Texas:

- Can this come out?
- Will you be able to get all of it?
- Is there a benefit to debulking? (taking part of the tumor prior to treatments - follow the link for more info)
- Is there a possibility of intra-peritoneal chemo or radiation during surgery? (bathing my peritoneum in chemo and/or shooting rays of radiation directly at the tumor site while I'm open - this isn't something they can do here in Gilbert, but they do have that capability in Houston)

At the end of the appointment, he told me that isn't unwilling to perform the surgery, he just isn't sure it's my best option and he doesn't want to do me harm. (Something about an oath he took when he became a doctor?) He ultimately said that he would do it, if Houston thinks it's my best option, and if there isn't anything they could do there that couldn't be done here.

So, we'll see. The man doesn't want to make a surgical move without having other surgeons look me over, and I don't blame him for that.

Today has been hard, but it has also been awesome. I'm so grateful for a surgeon who knows who I am, who jokes with me about the gender/names I give my tumors, who gets teary eyed as he shows me pictures from my last scan and explains how invasive my cancer has become, who tells me stories about his three year old and shares some of his beliefs with me (I learned a Hebrew word today!), who apologizes that he can't stay and talk to me because he has another patient waiting, who holds his arms out to give me a hug before I go to Houston.

Here's hoping I can make the same kind of impression on the doctors in Houston as I have on my doctors here in Arizona, because, frankly... it's going to take a village to pull me through this time.

Thursday, May 28, 2015

Dispelling Myths

Okay, so... I've been on the receiving end of some teary phone calls/texts/emails/visits in the last four or five days and while I'll be the first to admit that I am amazing, I don't think I'm amazing in the same ways that so many of my friends and family seem to think I am.

For example, I think I'm amazing because:

I can make cookies without a recipe. Actually, I can make a crap ton of things without a recipe, and without measuring the ingredients. I can go to a potluck and taste something and know what's in it and come home and replicate it. Almost every time. ... I think that's amazing.

I make friends everywhere I go. I have left restaurants - several times - with the contact info or schedule of a particular server, because they were so freaking awesome that we became friends in the course of a meal. Sitting by a stranger on an airplane is not a problem for me, because I've usually made that stranger into a friend by the time we hit 30,000 feet. I can talk to anyone, anywhere, about just about anything. ... I think that's amazing.

I can wiggle my ears, and I have a patented fish lips/eyelash batting combo that is guaranteed to make any child under the age of four laugh out loud. ... Again, amazing.

Like I said, I think I'm awesome. Amazing, even. But not in the same ways that I'm hearing other people say that I'm amazing. So, I'm here to set the record straight on a few matters.

Myth: I'm calm and/or at peace with what is happening in my body - to my life.

Myth Debunked: I am NOT, in fact, calm. Nor am I at peace. I am pretty pissed off about it, actually. Now, I may be able to talk about the facts of what is happening without bursting into tears, but that doesn't mean that I'm calm or okay with this on any level. I hate it. I hate the cancer, I hate what it's done (is doing) to my body. I hate that I have no control over the situation and am at the mercy of my insurance company and my doctors and God himself. I hate it. (And yeah, I know that my entire life is, and always has been, at the mercy of God. I know that. But listen, I'm still pretty mad at Him. And I think that's okay. He's a big boy, and He can handle it. And - hopefully - I won't be mad at Him forever.)

Myth: I always have such a positive attitude.

Myth Debunked: FALSE. (Don't believe me? Go ahead and scroll up and reread what I just wrote.) I do believe that we get to choose our perspective on things, that even when you're facing a formidable foe (cancer, anyone?) you get to choose your attitude and how you react to what is happening in your life. I believe that life is easier when hard things are handled with a sense humor, that a spoonful of sugar really does help the medicine go down. Do I make an effort to put a positive or humorous spin on my life in general, and specifically in how I share medical info? Absolutely. Because I think it's important not to get bogged down in what is hard, because letting yourself get sucked in by that will only make your journey harder. But it's not all sunshine and daisies over here. Not by a long shot.

The truth is, that little orphan Annie has me out-positived by about a hundred miles. Maybe because I'm a grown up and not a kid (also, not a fictional character), but I have a keen awareness that knowing that the sun's coming out tomorrow doesn't necessarily mean that it's going to be an easy, sunshiney, day. I am actually, against public opinion, a realist who's currently fighting a daily battle to remain optimistic.

Myth: I'm so brave.

Myth Debunked: I am scared out of my ever lovin' head! I mean it. About just about everything: treatment plans versus surgery, what either/both will mean to my quality of life in the future, traveling to Texas and maybe having to stay there for weeks while I undergo treatment, how much money this is going to cost, how long it's going to take to recover (from chemo, and from whatever comes next), how in the world I will ever get back up on my feet when this is all said and done, what the rest of my life will look like... what if it (whatever "it" ends up being) doesn't work?

I promise you, I don't feel brave at all. What I feel is fear, on a level that I have never felt fear before. Am I still going to walk into this with my eyes wide open? Yes, I am. But it's not because I am brave. ... It's because I don't have an option, other than to fight back.

Myth: I'm so strong.

Myth Debunked: What I am is stubborn. I was born with an iron will that has been both a blessing and a curse for my entire life. Sheer stubbornness has kept me smiling through multiple surgeries, radiation and chemotherapy treatments, more hard conversations with medical personnel than I would wish on my worst enemy, a handful of hard months, a few wicked weeks and some truly terrible days.

While I would never call myself weak (I am, after all, a shameless self promoter), I feel like it's important to say that I'm not as strong as my friends and family want to think I am. Nobody is. We all need each other. It's part of the plan that we rely on each other, so we can help each other grow. And I'm no exception.

So, now you know; I am not calm, I'm actually downright furious about the turn this tumor's taken, I'm not happy or positive all of the time. I don't feel brave, and while I'm not about to give up... I am super aware that both my body and my spirit are perilously close to breaking.

One of the hardest things for me to hear has been "You've got this". Because, here's the thing, kids. No, I don't. I am muddling through this, and I'm doing the best I can every day. I have hope that someone's going to know something that's going to turn this around, that there will be an option presented that I can wrap my mind around, be at peace with, and allow to shape my future. I will keep going and I will put one foot in front of the other, every day. But it's not because I've "got this", it's because I am dealing with this. One day, and often one hour, at a time.

And that's the truth.

Wednesday, May 27, 2015

My hair came home!

The wig came today.

I may or may not have lost valuable hours of this day to trying on the wig and then taking pics of me in the wig, and then taking more pics, and then... some more. It's basically been a selfie taking palooza over here tonight.

I have a photographer friend who suggested doing a photo shoot (which I will SO be taking her up on!), so at some point I'll have some pics from different angles. (You know, taken with a camera further away from my face than my arm can get it.) But for now, I give you a whole lot of self portraits. Enjoy!

The color is hard to define. It's a light brown, but definitely has red undertones. In some of the pics, you can see the blond in the top layers.

I love it! So much more than I thought I would, and I was expecting to LOVE it (in all caps)! I'm sure there will be more pics to follow, but I wanted to make sure I got some posted on the day it came.

You know, I really haven't minded being bald. It's just been another version of what I look like, but man... am I so happy to have my hair (and the hair of my peeps) back on my head!

Tuesday, May 26, 2015

I'm leaving on a jet plane

June 14th, Judy and I fly to Houston.

I received confirmation late this afternoon from MD Anderson that my initial consultation appointment has been finalized for noon on June 15th.

What this means: MD Houston has received and reviewed my medical records and done the initial, cursory, insurance verification, so I am approved for consult. (Because my insurance company is a national provider, they don't have to get preapproval for me to see the doctor. Any diagnostic tests (scans, biopsies, etc) will need to have preauthorizations before they'll actually be performed, but that's the same policy that MD Anderson follows here. Those pre-auths can jerk your schedule around, to be sure. But, at the same time, it's really good to know that they won't be running a $10,000 test on me without knowing up front that my insurance will cover it.)

I've been advised that I need to be available for 3-5 business days. I'll meet Dr. Z Monday afternoon, and then depending on what she thinks is the best route, I may be in and out for tests and blood work for the rest of the week.

Airfare was booked tonight. We'll land at about 3:00 in the afternoon on Sunday and we'll fly back out around 2:00 in the afternoon the next Saturday.

Exactly where we'll be staying is still up in the air... but I'm certain that will work itself out. There is a hotel on site that is owned by the hospital and run by Marriott. (Hello! I looooooove Marriott pillows!) They have reduced rates, and only MD Anderson patients, families and caregivers can stay in their hotel. (I'm sort of in love with that.) I called tonight to make the reservation, and they only had availability for the 14th and the 18th (we're in town from the 14th through the 19th). Did I still reserve a room for those two, non-consecutive, nights? Yes, I sure did. The clerk I spoke with said they could have cancellations for the other four nights at any time, and that I could call back every day if I wanted to see if anything had opened up. (Permission to call daily and semi-stalk the hotel of my choice? Mission accepted!) My back up plan is to make reservations at another local hotel for the 15th through the 19th, and then cancel those as soon as I know that I'm in at the Rotary House for the week. 

Anyway, I'm going to Texas. I'm not sure where I'm staying, and I have no idea what my schedule will be like while I'm there, but I'm going. In three weeks, I'll have (at least the beginning of) some new information.

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...)

Saturday, May 16, 2015

What a day!

Holy moly... today has been one for the books. (And I'm so tired that... oh, gosh. I don't even have words.) But today is a day that must be documented. So... here we go.

It was Jo's and my Third Annual at Schnepf Farm's Peach Festival.

So what if I only brought home about 10 peaches this year? That was about all I could carry. (I'm such a weakling now.) But I ate my fill of peaches in the muddy, slippery, mess that was the peach farm. And we got a good selfie. So... WINNING!

After tromping through the mud and the muck, Jo brought me home so I could rest up for an evening of good times at Kirk's house.

I'd gone over a couple weeks ago, and Hazel said something about how she wanted to paint my head, "like an Easter egg". Hello! I can do that. So, I sent Judy to the store for some paints, and Mary had about a bazillion brushes. Done and done.

Best family dinner/art event of all time.

Monson and Hazel were the most enthusiastic (and lasted the longest... until all of the black paint was gone, and until waaaaaaaay more than the approved amount of my skin had been covered), but all of the kids got into it. Strangely, I don't have a good pic of Russell with a paintbrush in his hand, but here is the proof that he left his mark.

The rules had been ONLY ON MY BALD HEAD. Not on my face, not on my neck, not on my ears. ... Monson and Haze got a little carried away. (And Monson was having a love affair with the pot of black paint. He seriously could not get enough of it.)

By the end of the game, I looked more like a convict with prison tats than a cancer patient (esp on the left/Monson side of my head), but it's all good.

This was my favorite pic of the night. This was at the beginning, before all of the weirdness happened on the side(s) of my head.

Kirk started with writing my name (he called me Lala when he was a baby, and it's sort of stuck), Russ painted on a cancer ribbon. I don't remember which of the big boys drew that big smiley face on the back of of my head, but it was Hazel who made sure there was a red flower and a blue butterfly to be pretty.

I love these kids. I love that when they think of me, they have memories of nicknames and smiley faces and flowers, and that they would want to make sure that a cancer awareness ribbon was prominent on my bald head.

The images that followed were more of the same: writing their own names, painting a beach scene complete with palm tree under the smiley face sun, and... who the heck knows what Monsy was trying to make happen with all that black paint down the side of my neck.

I'm so glad that the kids aren't afraid of the baldness, that I was able to help them make a memory that will (hopefully) make the cancer less scary for them. ... Best. Family. Dinner. ... Ever.

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.