Guest Writer

Hi, my name is Lori (Schuster) Cloud and I am today’s guest writer (and I use the term loosely) on Ashli’s blog. I am out in sunny California with her at the moment. It is 6 a.m. but I am still on Michigan time…she has conformed and is at this moment sleeping.

I have read many of your comments on her blog and she is blessed to have such supportive friends and family. You are all very kind in your words (with the possible exception of Alysia who is loving but has sarcasm streaming from her very pores and that is why I like her so much). I say all of this because you will probably find me harsh and abrasive and will not like me. I say it as I see it. I am like Ashli—except she has cancer so no matter what she says you can forgive her.

So, with that disclaimer, I will forge ahead. As I lay here this morning pondering what I might tell you in order to give insight into the mind of Ashli Fay Hepler (I don’t know her middle name and I haven’t had enough coffee to go ask)—one thing kept coming to mind—Ashli has strong opinions—about absofreaking everything. Today, I will not only uncover some of her most recent revelations—but will try and delve into the root cause of these feelings. Join me, won’t you?

The Likes and Dislikes of Ashli Fay Hepler:

1. ASHLI HATES MOUNTAINS.
When I went outside the first morning after I arrived, I saw these incredible mountains right behind Ashli’s apartment. I thought they were magnificent and every time I turn the car in their direction it takes my breath away. Ashli does not like the mountains. Apparently, while she is in favor of mountains in general, these mountains are not green. She believes them to be brown, however, they are more like the color of charcoal. Ashli ignores the mountains with as much indifference as Corlissa ignores stop signs. I don’t know why Ashli cannot accept the ‘brown mountains’—my guess is that she watched the “Sound of Music” too often as a child and came here expecting the Alps.

2. ASHLI LIKES SHOPPING.
I get it that this is not a revelation to anyone. In fact, Mastercard apparently sent a memo to all of the shoe stores in the Rancho Cucomonga area warning them of her impending arrival and suggesting they review their staffing requirements. In order to help you understand how Ashli’s apartment is situated I will try and paint a picture giving parameters that most of you are familiar with. Picture Grape Road. Triple it. Compact it into an area 1/3 of its current size. Add palm trees. Drop an apartment building on the perimeter and add a Starbucks for good measure. Welcome to Ashli’s little patch of paradise.

3. ASHLI LIKES PUKING.
At first, I assumed that Ashli hates puking as much as the next person. Now, however, I am beginning to have my doubts. While radiation does not normally cause one to vomit, Ashli has to take a shot to protect her salivary glands. This drug makes her vomit. She is taking a drug for nausea and it has helped some but, as I learned in vivid color last night—not all the way. I have been insisting that Ashli speak to the doctor about adding an additional drug so she need not vomit at all. Ashli is sheepish about that request. Yes, I used the words “sheepish” and “Ashli” in the same sentence. When I asked, the nurse responded like this was a definite possibility. Yet Ashli remains oddly silent on the matter. This leads me to the following conclusions:
--she refuses to get more medication because now she can be openly bulimic…without facing the stigma often attached to eating disorders.
--like a pregnant woman uses morning sickness and pregnancy to get corn dogs and chocolate chip cookie dough ice cream at 2 a.m., Ashli felt she needed a reason to explain why the only thing in her refrigerator is Jello and whipped cream.

It is a double edged sword however and I’m not sure she thought it all through. True, by playing the nausea card and skipping additional drugs, Ashli can get her friends to make her strawberry shortcake with home-baked biscuits for dinner. Unfortunately, she neglected to see down the road a little bit to a time when we would both be picking chunks of strawberries out of shag carpeting.

4. ASHLI HATES CANCER.
To say that cancer sucks is cliché at this point. Cancer reeks, it ravages, it destroys. Cancer takes you away from your family and your friends. It puts your life into a blender and chops it into something unrecognizable. It tears it into shreds and leaves it in a pile at your feet. I can’t blame Ashli for hating cancer—I hate it too. I hate it, but, I must give it its due. While cancer destroys it also regenerates. It allows us to be born again—not just spiritually but holistically. It reveals who we are underneath and opens our eyes to see past the little things. Cancer is much easier to hate than a brown mountain—but, despite its hideous façade-- it reminds us that life—and friends—are precious.

Birth of a Philosophy

In order to understand this blog, you must carefully read "Finito." I have birthed a new philosophy. I refuse to even type the details of the new philosophy within this blog because that might lessen my chances of it working in my own life.

Once again, I am very, very ill. So ill, in fact, I can hardly type. My face is stricken with bells-palsy symptoms which seem to be worsening. I cannot smile. I am no longer able to be the funniest person I know becuase I look too weird when I laugh.

Oh yeah... and I really, really want to hit a ton of traffic when I go to treatment and to pick Lori up at LAX tomorrow.

(If you are confused, it is probably because you have summoned up your "inner freshman" and have a compulsive desire to ask "What page?" the moment I finish spitting out the instructions to "open your books to page 46." Like I said at the beginning, you will definitely need to review "Finito" to make any sense of this blog).

Finito!

Alright, I'm done with this blog.

Just kidding. I am, however, done typing anything remotely positive or optimistic such as "I'm on new anit-nausea medication that seems to be working much, much better." Evidently, I type something positive, and the opposite happens (I'll spare you the details but suffice it to say the details include one smoothie all over a rental car). Here's my new tactic:

Oh... I'm oh so sick today. I'm throwing up. I can hardly stand. My face is burnt. I definitely won't be able to enjoy any of the Lugbill Family Vacation. I have no energy. Woe is me.

(If the Laws of Nature apply, the exact opposite should be taking effect in a few hours. Bear with me and let's see if it works.)

BENEFIT OR BUST. . .

The benefit is rapidly approaching. July 8th is only 2.5 weeks away!

-Anyone who would like to donate something for a door prize/raffle/silent auction: We must have all the donations no later than June 30th which is only a week from Friday. You can contact Steph Reed or myself.

-Anyone who is donating baked goods: Please contact Steph or I and let us know how much and what you are bringing. Baked goods can be brought the night of the benefit if you are coming right at 5:00 pm. If not, then you should probably get in touch with Steph or I to make other arrangements.

-Ticket Sales: We have not had very many people respond to pre-buy tickets. You can pay at the door, no problem, but it is helpful for us to know around how many people are coming so that we have enough food. Please give Steph or I a call or drop us an email with your name & the number attending (please note if some are children)

-Don't forget the dinner portion is from 5-7 pm and the band is from 7-10pm. The band is a bluesy type band and they are REALLY GOOD! I think you will all enjoy it!

We are hoping to make this a success for Ashli to help pay off the things she has already had to charge & also to pad her benefit account to pay upcoming med bills. Should we find that she ends up with more money than she needs, the plan is to donate the rest to one or a few non-profit organizations. No matter what, your money will go to a worthy cause. Thanks for your continued support & prayers. ~Alysia Lutz~

Alysia: 574-773-5348, toryalysia@yahoo.com

Steph: 574-903-0355, sereed_25@hotmail.com

Back Online

Sorry it has been so long since the last update. You don't have to say a word... I've already been getting a lot of flack for it.

Not much new to report. I'm in my apartment and have a steady cell phone signal and internet connection.

I had my first weekly visit with Dr. Luu. He seems to think it is "too soon" for me to be as tired as I've been. Evidently he has never sat in his own waiting room from 2:00 PM- 7:00 PM just to be put constricted in a mask that leaves a mark on your face for 24 hours after you're radiated.

On the bright side, my ear is a lot less painful and I'm on new anit-nausea medication that seems to be working much, much better (cuts my barfing down a few times a week as opposed to a few times a day).

The down side to this is that I'm not longer losing 2 pounds a day :( (Maryellen says this is not the way to diet anyhow).

This weekend I had my first fun adventure in Cali. Jeremy, Kristin, and I went in to Pasadena and went out for my birthday (a little belated since I was home for the actual holiday). Pasadena is a pretty cool town. It is set up a lot like Chicago with tons of stores and boutiques lining city blocks. I felt right at home. Even with all the new restaurant choices, we ended up eating at Cheesecake Factory. Old habits die hard.

Moving Day

Moved into my new apartment today. It is nice and will definitely be a comfortable place to be for the next 8 weeks. Guess what amenity does not seem to be working properly? The internet, of course. I cannot, for the life of me, fathom why I continue to be denied internet access! Why don't you just cut off my arm or something?

Right now I'm sitting in the waiting room at LLUMC. I wonder if my butt has made a permanent impression on this chair. Maybe I won't even need a scale and I can just measure my weight loss by checking to see how much smaller the indentation is each day?

P.S. - I've been meaning to thank Bob, Matt, and Alysia, who showed up to help me move in the rain. You guys are real troopers!

LIAR LIAR

Okay... I am a total liar. Forget the no side effects crap. I've pretty much been barfing steadily the last two days. I am totally over my obsession with omelettes because the even the word "bacon" makes me want to hurl.

Waiting Game

2 Treatments Down....38 To Go!

Day two was much better than day 1. I was only confined in the mask for about 30 minutes total. Not exactly fun, but bearable.

The worst part of this whole thing is waiting around. My appointment was scheduled at 3:15 today. Around 4:20 I actually got called back to the gantry (the treatment room). It is a good thing I bought that copy of Life & Style. I learned quite a bit about how Jen is dealing with the whole Brangelina African Hebrew baby thing. I think it's better that they're not together, but I'm still not convinced about Vince. I think she should go solo for awhile or maybe look into scientology or something (just kidding).

So, still no real side effects (the doctors assure me it gets worse as treatment progresses, but I'm not going to sit around crying about some sunburn that hasn't even happened yet). I'm still walking. I'm still driving. In fact, I drove solo on the freeway today. Three different freeways actually. I was a little nervous as my only freeway experience prior to today was the scene in Clueless where Cher and Dionne accidentally exit onto the freeway and nearly die, but I made it. I was switching lanes like a pro. These roads are no match for a girl whose dodged amish buggies her whole life!

Time to get some food. Jeremy is trying to beef up for football season, so he's mixing up some crazy protein drinks for me. Tonight we're going to try making a chocolate monkey with bananas, ice cream, and chocolate-flavored protein powder... YUMMY!

Countdown

1 Day Down.... 39 To Go!

My first day of treatment is over. This is good becasue the first day of treatment is by far the absolute worst. In order to be sure that everything is correct and they are radiating the exact location of the tumor, they put you in the mask, get you in position for radiation, and do a final CT Scan. The doctor then checks the scan to be sure that the mask is fitting properly and that they are aiming the protons precisely at the tumor. It is my responsibiliy to remain perfectly still throughout this process. Not only is the mask tight and uncomfortable, I also have a bite block in my mouth that makes it difficult to breathe and swallow. After all this is done, they start radiation. I endured this for 1.5 hours today. It was probably the most difficult hour and a half of my life. I thought I was going to have a panic attack near the end, but I made it. They basically tell you all the things that can happen if you move even a muscle. I'm not sure if knowing that easier or more difficult to remain still.

I was originally told that my radiation appointment was at 2:00 PM. About one hour before radiation each day I will be getting a shot of Amnifosten (it preserves your salivary glands so that you don't lose your teeth). This shot often makes people nauseated. So, to combat the nausea, I have to take a pill called Kytril one hour before receiving the shot. Following all these timetalbes is pretty important. Well, I did my part. I took my Kytril at noon and Jeremy and I arrived at LLUMC at 12:45. We waited in the waiting room until 1:45. I was starting to worry that I was going to miss my radiation appointment. I spoke with the nurse and she told me that my treatment was not scheduled until 3:30 PM. Was I crazy? I know they told me 2:00 PM. Hey... I know I've been scattered lately, but I was careful to write all these appointments down. Sure enough, my calendar said 2:00 PM. Anyway...things were a little off as far as our timetables today. I don't think the additional wait time was ideal for a first-timer.

Regarding the treatment itself... I felt absolutely nothing during radiation. My stomach was a little queasy afterward (maybe a 2 on a scale of 10), but it is hard to know if that is because of the radiation, the shot, or the fact that I've had a migraine for two days straight. So far, my skin still looks normal and there is no visible burning. The doctor gave me a prescription for Radiagel, which is supposed to help prevent the burning.

From this point forward, treatment should be much smoother. Now that they've double-checked my mask and marked where they need to aim the radiation, I simply get into the mask and start treatment each day. It should take about 1/3 of the time it took today. I will probably actually be in and out within 30 minutes. YEAH!

That's it for tonight. I'm still alive and it is good to know that, instead of this tumor attacking me, we are now attacking it! BITE ME ADENOID CYSTIC CARCINOMA!

Out of Touch

Wow...it feels like ages since I've actually posted. I know that must be frustrating for those of you who are relying on the blog as our primary means of communication.

Basically, the last two weeks have been a whirlwind. I'm sure there are people who are thinking "Teaching half days in the morning. That should be cake. I wonder if she's laying on the couch watching Tyra Banks and sipping a strawberry banana smoothie right now?" Let me assure you, that has not been the case. I've never worked so hard in my life. Jacquie (Rost) is probably the only person who has witnessed first-hand what a typical day for me has been like. On Wednesday, for example, I went to the chiropractor straight from work and met up with Jacquie there. Our cell phone minutes had just swtiched over, and as of 7:00 am that morning we had only used 57 minutes. Jacquie and I spent most of the day together. By the end of the day, I had used 350 minutes of the plan (this is not even counting the fact that I used the landline in Jacquie's office at Memorial for at least 2 straight hours). Virtually all of those phone calls were related to cancer in some capacity. I'm pretty sure this tumor is doing more damage to my cellular plan than my sinuses.


But, wonder of wonder, miracle of miracles, I am in California. Getting here has been a long, hard road paved with.... well...I am not sure this road was ever paved. Let's just name the road "Pothole Avenue." I don't know that I would want to go back and take this route again, but driving it has taught me that I'm stronger than I ever imagined.

Now for the medical details. I was scheduled to start radiation today. This morning I received a phone call from Maryellen. The gantry (the machine that runs the radiation) went down sometime last night. This happens maybe as frequently as the electricity goes out in our area. In the same way, they are never sure how long it will take to get it back up and running. It could be an hour (in that case they just bump everyone's appointments up an hour) or the entire day. Today's shut-down cost them the day and they had to call and cancel every appointment for every patient (I feel bad for Maryellen. I did the math and I'm pretty sure she had to call 132 patients today). So, tomorrow will be my very first day of radation. I have to be at LLUMC at 1:00 PM (4:00 IN time) so that they can give me the shot that will help preserve my saliva glands (I have no intentions of losing my teeth). Around 4:45, they will be getting me into the mask and double-checking my measurements. Around 5:00 your time I should receive my first dose of radiation. I know the times are important to those of you who are praying. I really appreciate your support! One specific thing you could pray about is my mask. My mask was made and fitted before I went to Hawaii. It is designed to be quite fitted so that it toally restricts my movement. Well, my face has swollen considerably due to all the flights I've been taking and the changes in the climate. I am a little concerned that the mask may not even fit at this point. It does not take long to make a new mask; however, I'm not certain they could make one and still radiate me tomorrow. I really don't want to delay this another day because each delay tacks on another day I'm away from home. As it is, there is only one week between the time I return home and the start of the new school year. Pray that the mask fits and we can actually get this thing going tomorrow!

Now for the bad news. I am going to be pretty out-of-touch this week. My cell phone signal goes in and out. Right now every single call I get is forwarded to voicemail as if I'm unavailable. I could be sitting here with my phone in my hand and, the next thing I know, my phone alerts me I have a voicemail. No ring. No nothing. If you call and get my voicemail, give me a few seconds and see if I call you right back. I may actually be available. The other issue is the internet. Jeremy & Kristin just moved into the new place this weekend. They are in the process of getting everything set up. Right now they don't have their own DSL connection. They are planning to get one; however, it probably won't be active until closer to the end of the week. Unfortunately, everyone else in the apartment complex is security-enabled, so we cannot tap into any avaialble connection. In order to get online, we are going to have to go to Azusa (where Jeremy goes to school) or to a coffee shop down the road. So, I may not be blogging or emaling as actively as normal.

I think things are on track for me to move into my apartment next Tuesday. My mail from my home address in Elkhart is set up to be temporarily forwarded to my new address in California. I also have my new address in California, so there are plenty of ways you can reach me via the USPS. Here is my address in California (keep in mind I wont be there to receive the mail for another week):

Ashli Hepler
7950 Etiwanda Ave.
Bldg. 4, Apt. 105
Rancho Cucamonga, CA 91739

That's it for now. I know that you will all be wondering how radiation goes tomorrow. I will try my best to find a way to get online tomorrow night to post an update. I definitely would not be able to do this until later in the evening here, so the soonest you all would get an update is late tomorrow night. I'll do my best!