Nothing to Lose -- Redux

New Year Update

2008-01-25T00:04:00.000-05:00

I wanted to update those of you who check in to see how we are doing. The holidays really weren't too terrible. There were tears and sadness, but we were able to enjoy our day together. It is still possible to break down at the slightest thought, though. That probably won't change for awhile.

I know that there was one person who expressed the desire to know what was done with the Memorial Fund. However, true to form, I can't put my hands on their info to let them know. Until then, and for the rest of you, this is what the funds were used for. Some of the money was used for the memorial tree at Bethel College. Money was donated for scholarships at Memorial High School in Ashli's name. We will be purchasing several bookcases to be used on the Elkhart General Oncology floor for a patient library and some materials to add to the collection of books, videos, dvds, cds, etc.

Finally, we would like to plan a date for those who would like to remember Ashli together in June or July to go to Chicago for an overnighter (or just the day). Many of you really have not heard each other's Ashli stories because you have never really met. We will all be sad at that time, but we would like to share the grief and love in a location and manner that is thoroughly Ashli: shopping in Chicago! If you would like to come and would like to help narrow down the date, please let us know.

We know that many of you continue to remember us in your thoughts and prayers and we thank God for that.

Our love,
the Heplers

Bethel College Tree Planting

2007-10-24T11:08:00.000-05:00

Here is the latest from Kelly, who is coordinating the Tree Planting at Bethel this weekend. . .
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I wanted to let you all know that the time of the ceremony was changed to 1:30 pm (to accommodate some very special people).

As for the location of the tree - the directions I got from the Bethel groundskeeper are as follows:

" it will be near the new helm, on the south side of the radius, southwest of the flag-pole, near the road to Oakwood."

I'm sure we'll be able to figure that out :)

Looking forward to seeing you all! Please email me at curtnkellymoses@aol.com or call 810-434-1162 with any questions.

Kelly <><

Bethel Tree Planting Ceremony

2007-10-12T12:19:00.000-05:00

Here is the most recent info from Kelly on the tree planting at Bethel which will be in a few weeks. . .
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I just heard from the groundskeeper at Bethel and everything is good to go for Ashli's tree :) They have zero issues with the plaque and are going to install it for us (huge relief)

The tree will be planted near the new boulevard entrance and the new helm. (just wasn't enough room near Brennamen).

In case you aren't aware of how to contribute, the tree and plaque will initially be paid for with money from the memorial fund set up for Ashli.

Please send any donations (to cover the cost of the tree, planting, and plaque) to:

Lake City Bank
Attention: Ashli Hepler Memorial Fund
202 W. Market St.
Nappanee, IN. 46550
Tel: 574-773-5553

I'll email everyone the week before the ceremony with exact times and locations.

By the way, we'd like to have a time of "sharing." So, if you have an Ashli story that you'd like to share, you'll have that chance. The overwhelming response is that everyone wants this to be a CELEBRATION of Ashli's life. I'm sure anyone would be hard-pressed to think of a time with Ashli during our Bethel days that didn't involve laughter, random inappropriateness, and humor; let's remember her that way!

Once again, please feel free to forward this to anyone you think might like to be involved.

Can't wait to see you all!

Kelly Moses <><

2007-09-20T19:18:00.001-05:00

I wanted to give you all further information on some of the great things that are happening in spite of the pain of our loss of Ashli's bright spirit. Alysia already updated you on some of them, but I am attaching some further information

This is from the South Bend Tribune:
Chargers honor Hepler

Ashli Hepler was a special person in the Memorial program.

The Chargers are making sure they remember their friend.

Memorial honored Hepler, who died June 20 from cancer, at their home match Sept. 11. The Chargers presented the Spirit of Ashli Helper Recognition Award to Paige Robison, a seventh grader at West Side Middle School.

"Ashli just had a huge impact on our program and our school,'' said Rost. "She affected a lot of kids. She just loved being around the girls and the sport.

"The award symbolizes what she meant to our program; love for team, selflessness, enthusiasm and passion.''

Hepler, who was an English teacher at Memorial, was just 33 at the time of her death. The award to honor her will be given annually to a participant in Memorial's elite summer camp and a plaque will be displayed in the volleyball trophy case at the school.

And an update on the tree planting at Bethel from Kelly Moses:

I'm in the process of finalizing the details for the plaque for Ashli's tree.

It will say something along the lines of the following,

This tree has been planted in Memory of

Ashli C. Hepler (Class of 98’)

1974-2007

and in Honor of the friendships made here,

at Bethel College.

"Because I knew you: I have been changed for good"

Also, Danna Jacques is taking care of the tree details. We're going to see about getting a "Chinaberry" tree (it's mentioned a few times in "To Kill a Mockingbird").

And finally, the details are to be finalized, but there will be two ongoing scholarships for Memorial High School students in Ashli's name.

Thanks for your love and support.

Perri

Faithful Few

2007-09-07T21:52:00.000-05:00

For the Faithful Few who are still reading~

I'm sure you'll be surprised (some of you elated) to see a new blog on here. It makes me laugh b/c I can see Ashli rolling her eyes that some of you will be sooooo excited that there is something new for you to read!!! There are a few things I want to make sure you know about:

1) On Tuesday this coming week, Jacquie w/ EMHS volleyball team will be giving a spirit award out to a volleyball player between the JV & Varisty games. Most of you know the volleyball team was something Ashli cared a great deal about. Most of our family will be going to watch and support the team and we welcome all of you to come who are available and would like to be there.

2) Kelly Moses (Crocker) is working on getting approval to plant a tree in Ashli's memory @ Bethel. I "think" the plan is to have people just donate to the memorial fund we set up for Ashli and we will pay for the tree & plaque with the donations we get towards it. I'm not sure if Kelly has gotten this approved w/ Bethel yet, but she's hoping to do some sort of planting ceremony over Bethel's Homecoming which is towards mid-late October. So for those of you who want to donate or if you want more specifics get in touch with Kelly. If you don't know how you can email me and I'll forward it along or you can just post something letting me know w/ your email Kelly will swing by and check.

3) Mom mentioned that she would like to plan a Chicago trip next spring (probably sometime in June) for friends of Ashli's (probably guys will be left out, but we haven't decided for sure). The thought was to carpool a bunch of us to Chicago, eat at Cheesecake Factory, shop, mayb catch a show? & just share happy memories of Ashli. I think it will be a really fun time. We figure if some people want to spend the night we can share rooms and if others don't they can just do the day trip thing. At some point we'll choose some dates and blog the ones we're considering. But we wanted to give you plenty of advance notice, so if you think you might want to go, keep it in mind.

4) Our Grandma is working on a book about Ashli's life. One idea we had for the book was at the beginning of each chapter or in different places throughout the book to have little memories from some of her friends. If you have a funny, sentimental or happy memory you'd like to share, you can email my Grandma at: Leakeys@aol.com

I think about many of you often. There is not a day that passes that I don't think about Ashli. Some days I smile at a funny photo I come across. Other days the dumbest, most piddly thing that reminds me of her brings me to tears. It's comforting knowing there are others feeling the same things & it's nice seeing that people are still commenting.

Love,

----Alysia

Gone Home

2007-06-21T14:13:00.000-05:00

Most of you know by now, but Ashli passed away last night. It's been a whirlwind of activity and we just want to say thank you to the countless individuals who have faithfully prayed for Ashli, lifted her spirits with visits, cards and phone calls, emails and all the fun things you've done to cheer her up.

The arrangements are as follows:

Viewing: This Saturday @ St Mark from 10-2 pm
Service: 2 pm also @ St Mark

A massive thanks to all of you who have been helping out so much the last day or two. You have been a huge help by bringing by food, taking over duties we simply can't tackle right now, and just "being there" to remind us of the good times, make us smile and laugh and pray with us. We know Ashli loved all of you dearly and we love you too.

So Ashli has gone home. We'll miss her, we'll grieve her. Let's be honest. . .there will be a LOT less adventure and humor in the world now that she's gone! ; )

And to Ashli: Thank you for the wittiness, sarcasm & humor you brought to all of our lives. Your courage and bravery were an inspiration to us all. We miss you. We love you.

--Alysia

REM Cycle

2007-06-09T12:06:00.000-05:00

Being bedridden is certainly taking its toll. Virually every night I dream I'm up and about and doig something. Often I wake up trying to get out of bed or holding out a glass because it is time for a refill as my amazing friends have taking me to Houlihan's for dinner.

The REM Cycle is amazing. It takes so long for you to realize that it is not your reality. It's all a dream. I've decided I want to pack my bags and just move in to my REM Cycle. Is that bad?

On a more serious note. I have a pretty bad cough with congestion. The doctors have tried a couple meds but nothig seems to be helping and the cough intensifies my pain :(

Your prayers are both needed and appreciated!

Visiting Hours

2007-06-08T10:21:00.000-05:00

Hi Everyone~

Thanks so much to all of you who have taken the time to call, drop by or offer to send meals for Ashli, Anne & Joel. The love and support you are showing is just AWESOME!!!

We have just one small request. . .for those of you who want to come visit Ashli, we welcome and encourage you to do that!!! But if you could please call the home phone and leave a message for Anne or Joel letting them know who you are, when you are planning on coming & how they can reach you it would be great!

Ashli has been texting with some people to make arrangements for them to come and visit. . .which is also fine, but sometimes she forgets to tell Anne & Joel and then we have several groups of people showing up at once. If you have been in her bedroom, you know why that's a problem. . .there just is not much room in there! =) Plus, we want to be sensitive and know that your time with Ashli is precious and special & we don't want you to have to "share" her when you are there unless you are coming as a group intentionally.

We thank you so much for your prayers and support we cannot begin to tell you what it means to be uplifted in prayer as a family.

Keep the prayers & visits coming!

Love,

Alysia

Ain't No Title Without Any Real Writing Direction

2007-06-05T21:47:00.000-05:00

It's been so long since I've written that I have no clue what I even need to say. I am back at home and set up with Hospice which means that my bedroom now looks strikingly similar to a hospital suite. The majority of my visitors are RN's. Babette asked her amazing friend Debbie to help out and she has been nothing short of a godsend. Anne and Joel have stepped up and become my primary care takers. It is rather humbling to realize that there are people who are willing to put their own lives on hold for the sake of yours. In an earlier blog Alysia mentioned that I have been losing some movement in my legs accompanied by lower back pain. It got painful enough that Dr. Jin ordered an MRI. I wasn't even worried about it because I didn't think anything else could go wrong. Much to my chagrin I learned that the tumor had spread to my spine which in turn caused compound fractures of my vertebrae. Obviously there was some explaination for all my back pain and my lack of ability to move.

As you all continue to pray, please pray for my spirits as well as my physical well-being. I am beginning to feel like I can't catch a single break in this uphill battle and as you can imagine that makes it hard to continue putting all your time, effort and energy into fighting. I think I can only thank God that I have amazing family, friends and supporters who are walking beside me on this difficult journey.

My love to all of you

Update

2007-06-01T08:32:00.000-05:00

Ashli wanted me to give another update.

We found out she will not be resuming further treatment in Chicago. They felt it was counter-productive because it was not really helping control her pain like they wanted/expected it to. At times it seemed like it was making her "feel" worse rather than help her.

They are in the process of setting her up with hospice. This will be beneficial b/c "hopefully" that will mean that she won't have to be traipsing back and forth from home to hospital as often. They can set her up with a hospital bed etc at home and all that and it will be a lot more convenient for her and comfortable for her.

They would like to get everything set up at home for Ashli yet this weekend. If anyone is able to help today or tomorrow with moving furniture etc setting up, I know we can use the extra hands. You can call Ashli's home phone number and leave a message where you can be reached and either Joel or one of my parents will get back with you on when they will be doing things today and tomorrow. Thanks for your help and prayers!

--Alysia

Another Update

2007-05-29T14:46:00.000-05:00

Hi All,

I heard people have been calling. It's been a very busy and trying few weeks. Ashli wanted to blog herself, so that's why we were waiting to update you. . .but I will give you a brief update and she can go into detail later when she has time.

Ashli's doctors at Chicago have decided to stop her treatments for now. They think it was perhaps hindering more than helping. Obviously this means anyone who was supposed to drop off or pickup, you are off the hook for now! =)

For the last few weeks she has been having some serious problems with her back. Last week it all culminated in a trip to the ER b/c she was having problems feeling her legs. They ran some tests at the ER and everything came back "normal". But she is basically paralyzed from the waist down right now. The nurse at the ER couldn't tell us if this was related to the tumor or if the back/leg thing is semi-unrelated and 'may' go away if her back gets better.

Please pray for relief for Ashli's back. The spasms are very painful for her and the immobility is very hard for Anne & Joel since they are the ones primarily helping her now that they are moved in.

Thanks!

--Alysia

G-Tube In!!!

2007-05-17T14:47:00.000-05:00

The G-Tube is IN PLACE!!! Thanks! Your prayers must have made the difference this time around! =)

--Alysia

Update

2007-05-17T07:49:00.000-05:00

Hey all,

It's Alysia, Just logging in to give an update. As most of you know, last week, Elkhart General tried to put a G-Tube in for Ashli. . .TWICE to no avail. Apparently, her bowel is blocking one opening the tube needs to come through and her rib is a little low and is blocking the other opening. Ashli was released from Elkhart last Friday afternoon. By Sunday when I took her to Chicago, she was in sorry shape. So they were not allowing her to have her chemo/radiation yet. On Tuesday morning Chicago took a 'stab' at trying to put the G-Tube in. They could not get it in either. This afternoon they are trying ONE MORE TIME to put the Tube in. This is a HUGE area for prayer today. There are other ways for Ash to get nutrition, but there are more risks of infection with those other methods and it's harder on her body. Today they are going to try to SURGICALLY put it in. (Rather than just go through her mouth etc). Please pray that things will go well and that her body will recoop from surgery.

Also, if people are willing to stay with Ashli while she is in Chicago, I know she appreciates it. After being there with her for a few days, I now understand completely why she doesn't want to be there alone. It's hard to get the nurses to come when you need them. I don't think this is a testament to their skill, just that they are grossly understaffed in oncology. But regardless, it does affect the type of care she receives.

For those of you who signed up for pickup/dropoff for Ash, we are now just going to fly by the seat of our pants on that. We have no idea if they will keep her and have her treated next week or if she will be released and have to wait yet ANOTHER week for her third round. If that is the case, she will be almost a month behind on her treatments. =(

So obviously this is another area of prayer. . .that they can find a way to keep her HEALTHY on her off weeks so that her body is ready for her next round of treatments.

Thanks for your continued prayers. If anyone is willing to maybe take a few days out of their schedule to stay with Ashli in Chicago please email me or call Ashli's home phone and leave a message. I believe I posted my email in a prior message. Thanks!

--Alysia

One more quick thing

2007-05-10T08:44:00.000-05:00

In Anne's excitement to tell you all the funny dreams Ashli's been having she forgot to ask if anyone was available to go stay for a portion of next week (end part) w/ Ash in Chicago. Ashli hates being in Chicago alone.

I am going to drive her up on Sunday and stay through Tuesday afternoon. So if someone happens to be free either maybe Wed & Thurs or Thurs & Fri, then drop me an email or call Ashli's HOME phone and leave a message for her on the machine. Now that Anne & Joel are moved in, they will get the message and can help make arrangements and give driving directions.

toryalysia@yahoo.com

Thanks~

--Alysia

Same old Ashli a few new tricks

2007-05-09T15:46:00.000-05:00

Hi everyone! This is Anne the invisible sister because to those of you that have not met me I have only been known in theory. I was sitting with Ashli at the Elkhart General Hospital and thought I would update you all on what's going on with her. We came to the hospital on Mondy, April 3oth because Ashli was having alot of chest congestion. They decided she had a slight case of pnemonia which they have been taking care of. They also decided they wanted her to go to Chicago to get a feeding tube on this Thursday. Then they decided not (so for those of you who thought she was going it's off now.) As of today, the plan is she will be coming home on Friday, then return to Chicago for her next round of chemo and radiation.

So, now that you are all caught up on the information, I have a few funny Ashli stories for you. As many of you know, Ashli has been on some pretty strong pain meds one of which cause her to come in and out of sleep and have some very vivid dreams. First story, Ashli had a couple of visitors here and they were having a nice serious conversation when she dozed off. When she came to she said "I want another sandwhich." Turns out she was dreaming about an Arby's beef and cheddar. Second story, a couple of days ago she fell asleep with a box of kleenex beside her, she proceeded to pick it up and start tearing the box open. When she came to she said she was dreaming she was opening a box of ice cream bars. There are many more funny stories but I thought you would like to know that as we all know, Ashli is a very funny person, but dilaudid makes her funnier.

A Difficult Quandry

2007-04-27T07:04:00.000-05:00

I have not blogged much about Corlissa lately. Things have been a little difficult between the two of us. Those of you who know her well, know that she is pretty scared about everything that's going on with me. This has translated into an increasing distance between the two of us. On Tuesday night, one of my worst fears was realized: she is moving out of my house. It is hard to know whether this is for the best or whether to fight it tooth and nail. Everyone keeps telling me that I need to focus on my health and while I know that is true, it is easier said than done.

Please keep both of us in your prayers as we make decisions about the directions of our lives. As you can imagine, this is very confusing...well, off to radiation! What a crazy time this is.........

Oops... I forgot

2007-04-23T11:55:00.000-05:00

Oops... I forgot to give you my vitals (can you tell I've been in the hospital for too long?

Bernard Mitchell Hospital
Room TN623
5815 S. Maryland Ave.
Chicago, IL 60637

*this is the hospital that has restrictions on fresh flowers and latex balloons. This is common on many oncology floors as chemo patients have a greater tendency to have reactions to flowers, plants, and latex.

Back in the Saddle Again

2007-04-23T11:21:00.000-05:00

Alrighty... I am officially settled back in the saddle in Chicago. Okay, not quite a saddle... more like a trend-setting device that allows me to raise the head or foot of my bed with just one touch of a button. And this time I am really settled. I've decided to make my saddle more comfortable by suiting it with some 400 thread count sateen sheets. They keep snapping right off this cheap, crappy mattress, but at least they have been a popular discussion topic with the nurses.

For those of you who don't know, sores in the mouth are one of the main side effects of radiation. They are called mucusitis. They told me this would happen and I signed off that I had read and understood about the side effects of my radiation. This list is deceiving. Rather than listing "mucusitis" as one of the possible short-term effects, they should just write "your mouth and throat will loak and feel like a piece of raw meat." This has honestly been the hardest part of my treatment thus far. These sores make it incredibly difficult to chew and swall. The only releif I get is from a numbing mouthwash. This only alleviates the pain for about a half an hour. Fortunately, Dr. Vokes seemed pretty concerned about this side effect and lowered the dosage of each of my 3 chemotherapy agents.

We also realized that my skin is definitely sensitive to tagaderm, one of the clear dressings they use to keep needles and tubring secured to the skin. I get itchy and my skin will often blister up. We finally found another dressing that seems to work without the allergic reaction. YEAH!

I want to give a huge thanks to those of you who have been helping out by providing rides to and from Chicago and especially to those of you who have taken time of your professional/personal lives to come stay with me in the hospital. It has been an enormous help to alleviate a burden of fear and loneliness. These first few weeks have been quite scary. I am so grateful that I haven't had to "go it alone."

Just keep praying. Everyone keeps asking how they can help. That's the best thing we can all do.

Call Me George

2007-04-17T10:37:00.000-05:00

Contrary to what you may have heard, I did not give up blogging for Lent. Beleve it or not, my laptop has been restored to working order. So, I've got this lovely new house with space for a fine office and working office equipment; however, evidently no one in the freaking universe offers DSL service in my area. Connecting throug a modem just seems so pre-historic. My neighborhood butts up against Copperfield which has to be one of the highest per-capita income neighborhoods in Elkhart County. You would think someone would want to tap our gold mine. Come on Verizon. Aren't you always looking to make a quick buck?

Okay I have officially decided that my life is one big Seinfeld episode (only it doesn't seem so funny sometimes). Here's the problem, though: If I were casting my episode, I would want to be Kramer. After all, what does he have to do except show up and be funny (sounds like type-cating to me). Instead, I am evidently stuck playig George in this dang episode. Yes, George is bald, but beieve it or not, I still have my hair (Interesting sidenote: Did you know that if your doctor writes a prescription for a "wig" it is denied by insurance. Insurance companies will only pay for a wig if your doctor prescribes a "full cranial prosthesis").

Why do I feel like George do you ask? Well... let me tell you about my string of bad luck. Cancer. Need I say more? Laptop 1 breaks down. My car breaks down. Corlissa's car breaksdown. Stuck in God-forsaken Rancho Cucamonga all summer. Back from Cali. Feeling better. Definitely skinnier, but can't afford to shop because of the dang cancer. My car breaks down again. Corlissa's car breaks down again. Almost set my small apartment on fire. Laptop 2 breaks down. Kevin fixes laptop 2 (Thank God my friend Jen knows how to pick a husband. Sorry I called you a computer geek in high school, Kevin). More cancer. Stuck in lots of hospital beds. Corlissa's car breaks down again (This time it will cost $1,470 to fix, so we wil definitely not be fixing it). We are now down to 1 car, but... DO NOT FRET! I have now started losing vision in my right eye and can hardly see to drive anyway.

Although I still wish I could just play Kramer, the silver lining is that I've got great friends and family who are the only things making life as George bearable!

Request From Ash

2007-04-12T10:04:00.000-05:00

Ashli wanted me to update you all on one more thing. . .

Many of you may not know that our yongest sister, Anne, & her husband Joel have offered to move in with Ashli to help her keep up the house and some day to day tasks etc. They are currently living in Indianapolis while Joel is finishing up his Masters degree.

Some things have fallen through recently, and we need a lot of prayer that God would open doors for them to find jobs up here so that them moving home can become a reality. This is definitely a big need b/c it is getting harder for Ashli to keep up the house on her own and having Anne and Joel move in would be great since Ashli can't keep up the house on her own right now.

A few people suggested I add to this blog what Anne and Joels career interests are, so here they are:

Anne: Anne is a nationally certified pharmacy tech & is looking for something part-time at a hospital. Anne is hoping to work part-time so to be able to help take Ashli to appointments etc.

Joel: Has a bachelors in history and is almost done with his masters in library science. He is looking for something at a university library, or at a public library. He has special interest in archiving. (hence the history major)

Thanks so much for the continued prayers!

--Alysia

Prayer Requests from Ash

2007-04-11T08:12:00.000-05:00

Ashli has asked for some very specific prayer.

-Skin irritation: Ashli is already starting to see some redness & have itchiness/burning in the area where she's being treated. Often the radiation can cause severe burning and permanent scarring. She was fortunate that she didn't have this in California, but is feeling dicomfort already, so there is concern re: that this time around.

-Her Port: Her old port was removed last night and the new one put in sucessfully. She said there is a lot of irritation and tenderness near her port area. She would like prayer for relief from that since they are accessing it day and night it can be painful if that doesn't go away.

-Mouth sores: the chemo has some pretty nasty side effects that "can" occur. Mouth sores are one of the common ones which can cause trouble eating and swallowing.

-Tuesday appointments: We found out Ashli has to meet w/ her doctor in Chicago every Tuesday, including her "off" weeks. It will be a scheduling nightmare trying to get her to Chicago every other Tuesday for this, so we have asked the doctors to consider working with Elkhart General and allowing a doctor there to do her appointments and report to her Chicago doctor on her "off" treatment weeks. Please pray for understanding on the part of both doctors that they would allow this to work!

That's all I can remember she told me. Today is hump day, so almost one week is down w/ 7 to go! The count down is on!!!

--Alysia

Adventures of Ashli & Haz-Mat

2007-04-10T12:22:00.000-05:00

Some may think that spending all day, every day, in the hospital would be a boring way to pass the time. Those people obviously have never been admitted to the University of Chicago oncology floor.

Ashli's trip started off seemingly well. She and her friend Holly made it to Chicago in rapid-fast time. They even found a parking spot (a good one!) which is pretty much impossible @ U of C. Ashli started chemo on Sunday night and the only small hiccup was that her port wasn't working properly. For those of you who don't know, Ashli had a port put in her chest which has tubing so that they can just stick a needle in to give her whatever she may need, be it chemo, liquid nutrients, or pain meds. Unfortunately, the port hiccup was only a foreshadow of the drama to come.

Monday rolled around, and Ashli's first radiation treatment was scheduled for 11:30 am. Blast from the past: in typical "California" fashion, Ashli wasn't called down to 'in patient waiting' until 12:45 pm. Once there, they had more waiting to do. Thankfully, it seemed they would have the waiting room 'mostly' to themselves. Little did they know that their one, lone waiting-mate was a bit of a loony. The gentleman was on a stretcher and apparently, after a short time he started yelling "Help! Somebody help me! They're trying to kill me!" Truthfully, I'm not sure how long they had to share the same space with this disgruntled patient, but Ashli was not called back for her treatment until 3:20 pm. That's right, nearly 4 hours after her scheduled time. (Now it really is sounding like California isn't it?)

Immediately following her radiation, Ashli was taken to imaging. They wanted to figure out why the port wasn't working properly. Low and behold, the images showed that the plastic tubing inside Ashli's body was all coiled up, so they decided to schedule another operation to remove that port and install a new one on the opposite side of Ashli's body. After all this, Ashli didn't get back to her room until around 6 pm. Oh, and mind you this whole time she's been unhooked from her pain meds & hasn't been able to eat anything!

You would think that is the end of this saga, but alas, it's not. Later that evening Ashli got up to use the restroom. She was coming back and her friend Holly noticed blood on the floor. They both kind of wondered where it was coming from, so they started looking and realized Ashli's IV had come unhooked and blood was gushing out! Now remember, Ashli's had chemo drugs pumped into her body for the last two days. Her blood contains toxic chemicals. So who ya' gonna' call? No, not ghostbusters. . . .HAZ-MAT!!! The hazmat team was called to clean Ashli's room and "detox" it while poor Holly had to wait in the waiting room for three more hours!

Tune in next time for the second edition of Adventures of Ashli & Haz-Mat!

--Alysia

Treatment Underway. . .

2007-04-09T11:47:00.000-05:00

Hi Everyone,

Just another update. . .Ashli is in Chicago and started her chemo last night. The bad news is that they are having trouble accessing her port. The GOOD news is that they are more flexible on what pain meds they will allow her to take so she is finally getting some relief from her pain.

The address is: University of Chicago, Mitchell Hospital, 5841 S. Maryland Ave, Chicago, IL 60637-1470. Thanks for your continued prayers!

--Alysia

Quick Update

2007-04-06T10:17:00.000-05:00

Hi Everyone,

Just a quick update on Ashli's treatment and then on to some Thank You's that are overdue. . .

Ashli will go to Chicago on Sunday and start chemo Sunday evening. Sometime on Monday will be her first radiation treatment. Please pray for a sense of peace for her and that the treatments don't take too much out of her. It would be nice if she felt like it was HELPING not HURTING her. . .also, the big one is to continue to pray for pain management and that she can keep food down. She's starting having problems with that again, but she only has a few more days to make it through before going to Chicago.

Thank You's

Jacquie & Scott Rost & the memorial kids: Thank you so, SO much for cleaning up Ashli's yard. She has been raving about how 'it looks like a totally different house' thanks to all your hard work. Words cannot express how nice it was to have you coordiante that and do it! We appreciate it so much!

Steph Reed: Thank you for staying with Corlissa while Ashli is in treatment and for offering to do all her drop-offs to Chicago. Honestly, it's such a relief to all of us to know Corlissa will have someone with her and is so nice to know that we won't have to drive to and from Chicago every other week.

Lisa Baker, Jacquie Rost & Erin Hartman: Thank you for also offering to drop off/pickup Ashli at Chicago appointments. Again, it's so nice to have this be something we don't have to worry about!

Babette & Holly: Thank you so, SO much for going to Chicago this week with Ashli. She was so nervous about having to start treatments again & I know she really appreciates having people there with her the first few days.

For everyone else: Thank you for your prayers, your cards of encouragement, phonecalls and visits. It has been nice for Ashli (and our whole family) to be surrounded in support & love by all of Ashli's friends.

--Alysia

Back to Treatment

2007-03-31T13:28:00.000-05:00

Ashli asked that I update everyone on the appointments in Chicago this week.

She will begin chemotherapy & re-radiation treatment on 04/08/07 in Chicago. She'll do the chemo & radiation 5 days a week and will rotate 1 week of treatment, 1 week off to rest for a total of 6 "treatment" weeks or 12 "rotation weeks" total.

Her pain is still pretty bad and she's been sleeping a lot. Please continue to pray for pain relief for her as that is one of the hardest things for her to cope with right now.

---Alysia

Still Hospitalized

2007-03-24T13:52:00.000-05:00

Hi everyone,

Just thought I should update and let you all know that Ashli is still hospitalized. She is not going to be released today and they are pretty certain she will not be released tomorrow morning. Ashli would specifically like people to pray that the pain meds start working. They have weened her off the morphine pump and have re-introduced her oral pain meds. These don't seem to provide her with nearly the relief she was getting and she has been sleeping a lot.

Thanks again for all your visits, cards, prayers and phone calls. They mean a lot to all of us~

--Alysia

Hopefully more answers soon. . .

2007-03-21T10:04:00.000-05:00

I got a call from Ashli today. The doctors in Chicago said that in-light of the new info that the ear biopsy came back cancerous, they see no need to do the full biopsy previously discussed. She will have an appointment sometime next week in Chicago, in which they will discuss the treatment plan they have devised for her.

Just wanted let everyone know that is the latest info. Pray that she continues to get her strength back so that she is prepared for the upcoming treatments they will propose. . .

Thanks for your prayers!

--Alysia

Back in the Hospital Again

2007-03-19T15:49:00.000-05:00

So here is the lastest. Ashli is back to throwing everything up. She had her appointment today in Chicago and they did let her come "home" but told her she had to be admitted to Elkhart General to deal with the vomiting issue. There is not a direct phone number to her room so your best bet would be to try her cell.

The hospital address is 600 East Boulevard, Elkhart, IN (I'm not sure the zip)
4th Floor(Oncology)
EGH is much friendlier and there are no restrictions on what she can receive. Plants, balloons whatever are fine. I don't think they really know how long she'll be in. The doctors @ Chicago are meeting again tomorrow to discuss her case. In light of the new info from the ear biopsy they 'may' allow her to forego the biopsy scheduled for Wednesday, but we won't know that for sure until tomorrow either. . .

Oh, and no visiting "hours" so I guess visitors can just come and go as they please. But please call Ashli's cell before coming to visit. Thanks!

Hope you find this info helpful.

--Alysia

Pivotal Week Ahead. . .

2007-03-19T07:43:00.000-05:00

This week will be a pivotal week for Ashli and our family. As you can tell from her previous post, she is getting discouraged and needs us to lift her up and encourage her. Tomorrow (Monday) she has an appointment in Chicago. She has not had a good day physically today and needs the strength to mentally and physically make it through this appointment. Her dad and sister, Anne, are going to the appointment with her.Pray for their safety as they travel and their peace of mind. Pray that they know what questions to ask and that they have clarity of thinking as they deal with a lot of information. Pray that the doctors have wisdom in choosing the best course of action in treating Ashli.Ashli is scheduled to have a biopsy on Wednesday and this is a scary proposition for all of us. Pray that fears will be calmed and that the doctor's hand will be guided. Pray that Ashli suffers no unnecessary pain or damaging side effects.As always, thank you as you support us and pray for us.

--Perri Hepler

The Ship is Sinking

2007-03-16T13:15:00.001-05:00

To be honest, I've been avoiding updating the blog. I know that is stupid. It's just that I am in a place where I cannot think of anything witty of positive to say.

On Wednesday night I got a voicemail message from Maureen at the University of Chicago. While I was in the hopsital there, they took another MRI. The "tumor board" met and reviewed my MRI results by comparing this MRI with the one on file from back in January. It is obvious that there have been changes and growth in the mass in my brain. At first, I was in total and complete shock. I parked my car in the garage and just sat there for a few minutes. My shock gave way to anger -- Why more bad news? I feel like I deserve a break here. Doesn't God owe me some good news at some point? (Don't worry...I already know the answer to that qusetion. I'm just attempting to be honest about my feelings here).

I think now I'm just in a spot where my spirits are sinking. I feel like this situation continues to get worse and worse. It's hard to expect it to get better because everytime I do I just end up being more disappointed. I spent the evening at Karl & Danielle's and they prayed with me. Danielle even came back and spent the night at my house (bless her and Karl for giving her up for the evening). That helped some.

At this point, I feel like I've grown numb. It almost feels as if I'm sleepwalking through my own life. I received another voicemail from U of C yesterday. I have a consultation with Dr. Yaminin, their cheif neurosurgeon, on Monday. They now would like to proceed with a biopsy and propose that we do the biopsy on Wednesday. On Monday he is going to give me details about the procedure and I will be able to tell you all more then. I do know that they plan to try to resect several samples of tissue so that they can come up with some conclusive answer as to whether or not this is cancer or scar tissue. I was really hoping that they would be able to use the ENT surgeon and perform the biopsy through my ear; however, that is an impossibility and the tumor board agrees that their best chance of getting a good tissue sample is by going directly through my brain. Obviously that is an incredibly scary through to me. I'm sure Dr. Yamini has cut into the human brain a million times -- but I've never had mine cut into. The prospect is terrifying.

I'm sure that this post gives you a number of specific ideas about how you can pray for me/my family. More than anything I feel like I need some renewal of hope. It all seems to be fading away at the present time :(

Return to the Land of the Living

2007-03-13T10:06:00.000-05:00

Thanks to Mom & Alysia for keeping everyone updated during my absence; I am back among the land of the living. It appears as if the nausea and vomiting are at bay. Unfortunately, we do not necessarily have a definitive answer about what caused this in the first place. The good news is that the neurosurgeons did not feel like it was a result of intercranial pressure. This basically means that the tumor is not putting so much pressure on my brain that it is causing all the nausea and vomiting. In essence, it doesn't look like this is the result of some radical change in my tumor.

Instead, it seems like my body just worked itself into this ridiculous funk. All the vomiting put me in a state where I could no longer keep any of my medication down. That made me even sicker. My body was just starting to shut down. A good dose of saline and morphine pumped through an IV sure made a difference. They re-introduced my medications one at a time to be sure that a specific medication wasn't the culprit. I am now back on the full dose of all my meds. I'd say that getting some rest helped, but evidently they don't want you to rest in a hospital because they wake you up every freaking five minutes for one thing or another.

I had a follow-up with Dr. Press regarding my ear yesterday. It continues to have pollups and clots and other crazy growths. She elected to biopsy a piece of this tissue since we cannot seem to combat all the infection. Pray that we get some answers and relief fom that. Thanks for all of your prayers and support.

Thanks to Danna & Bobby who brightened up the otherwise dim oncology floor with some renegade balloons! I continue to hear from my friends, "Well... I've been wanting to call, but I didn't want to bother you." Apparently, everyone is adopting this mentality because NO ONE IS CALLING! Please don't be afraid to call. Unfortunately, I'm finding that a sickly life often yields a lonely life. ButI've got caller ID and, the truth is, I just won't answer if I don't feel like talking to you, so CALL ME!

Back Home Again in Indiana

2007-03-11T09:48:00.000-05:00

After much frustration with the speed of the medical wheels turning to get all of the sign offs on Ashli to get her discharged, we finally headed out of of Chicago at 4:30 last night. Ashli is feeling much better. She hasn't vomited for a day and a half (which is much improved from every 45 minutes on Tuesday night). Her snappy comments have returned, and she had an entire nights sleep without an IV monitor going off 4 times or having her blood pressure checked. She is still tired and needs to take things a little easier, but her appetite is back and her mind is running full tilt. I am planning on going home tonight; she will be relieved to not have to hear my snoring and I will be relieved not to hear "Mom can you...............". The next time I take a road trip to Chicago with Ashli I hope to see more blue sky, restaurants, shopping and luxury accomodations. Thank you all so much for your faithfulness in praying for Ashli and letting her know how much you love and care for her.

Mom

An Unhappy Place

2007-03-08T16:18:00.000-05:00

Apparently the oncology floor at Mitchell Hosptial in Chicago is a very unhappy place. . .

Not only do they not allow flowers, but they also don't allow "latex" balloons b/c they set the alarms off or maybe allergy reasons. . .We've been told mylars should be OK.

Mom just wanted me to let you guys know.

For the one person who already sent latex balloons. . .thank you for being our guinea pig and Ashli still got to see her balloons and appreciates it!!

--Alysia

Hi-Ho, Hi-Ho, to Chicago Ashli goes. . .

2007-03-08T09:38:00.000-05:00

Just checking back in this morning. Last night Ashli was transported to the University of Chicago & Mom went with her. She stayed last night and it is quite possible she will stay through the weekend. . .(but nothing's been confirmed as to when she's coming home yet.)

They have her IV'd to get her some nutrients and Mom said she slept a lot better last night but still had some problems keeping things down.

Just an FYI: Some of the buttons on Ash's cell aren't working so well, so she's not able to really text b/c the one w/ "P, Q, R & S" isn't working. (obviously R&S are pretty important texting letters!)

Her phone # at the hosptial is 773-753-1577, if you need to get a hold of her, but please be sensitive since she's not been sleeping much. You may try try texting first and just ask my Mom? "Ok to call? Ye or No?" That way she can text back since she doesn't have an "S".

The address at the hosptial is: University of Chicago, Mitchell Hospital, 5841 S. Maryland Ave, Chicago, IL 60637-1470, Room # TS-653. Also, Mom mentioned that there are no plants or fresh flowers allowed on her floor. . .so keep that in mind.

Kelly Moses is starting a prayer chain for Ashli. This is the letter she sent:

Hello everyone.

As you all know, our dear friend, Ashli is battling Cancer.

We decided to come up with a Prayer Chain for Ashli. A spreadsheet has been set up covering everyday of the week; 8 am - midnight, in two hour segments.

We know so many people have been praying for Ashli and this way we know she'll be prayed for constantly.

If you would be willing to cover one of the time slots, please email Kelly Moses at curtnkellymoses@aol.com, with your name and email. We'll update the spreadsheet and email you any specific requests from Ashli.

Thanks for your prayers for Ashli.

"Pray for one another, that you may be healed." Jam 5.16b

You can sign up for time slots 7 days a week, 8am-10am, 10am-12pm, 12-2pm, 2-4pm, 4-6pm, 6-8pm, 8-10pm. 10pm-12am. If anyone would like to take a slot on a day or two you can email Kelly at the address above and she will fill it in.

Thanks so much for your continued prayers! We will be in touch as we know more. ..

--Alysia

Pray, Pray, Pray!!!!!

2007-03-07T11:39:00.000-05:00

Ashli doesn't know I'm posting on her behalf today, but I wanted to give you all a quick update.

Her nausea is just getting worse. I was with her on Friday night and she ate a small amount of spaghetti & had a little salad and probably 40 minutes later was puking it up.

Mom & Dad were with her on Sunday and had pizza, same story. Basically, she's keeping nothing down, including her meds. Finally today they called Doctor Wheeler and he said for her to go to the Emergency room.

Mom is with Ashli right now and they are at Elkhart General Hospital. I'm not sure if she will be admitted or not. But we sure could use your prayers right about now. I know University of Chicago wanted to wait until the end of March for her next appointment, but if she can't even keep her food or meds down, my hunch is they will speed things up a little.

Please pray for her spirits and her physical well-being.

Thanks,

Alysia

Jumping the Gun

2007-03-01T11:41:00.000-05:00

Okay... the whole "first taste of pain management" was simply a tease. I am struggling so badly with nausea and vomiting that I cannot keep any of this helpful medication down. It seems like am stuck on a pendulum -- one week up, one week down. At this point, I'd settle for being caught in the middle with no movement whatsoever.

I have tried to isolate the cause of this and cannot identify a culprit. All I know is that they need to make a Pedialyte for grownups that tastes like Diet Coke rather than a half cup of orange drink mixed with 5 cups of sugar.

Pray. Hard.

Improvement

2007-02-21T15:32:00.000-05:00

The only new tidbit I have to offer you is that the medication is definitely helping. I think I'm getting my first real taste of "pain management."

Alysia Pretty Much Covered It

2007-02-15T12:46:00.000-05:00

If you read Alysia's last entry for me, then you've pretty much got the update. I definitely want to reiterate that I definitely feel more comfortable working with the University of Chicago (UCH) after Tuesday's appointment.

Dr. Stenson (She one of the surgeons on my team at UCH) explained that I've been the topic of discussion at almost every meeting and that they've really been discussing and working on the best plan/course of action for me. Dr. Haraf (the radiation oncologist on my team) says he will not put me through another round of radiation unless we can prove with certainty that the "hot spots" on my PET Scan is new cancer growth. The only two options for proof are (1) biopsying (they are looking for a safe/effective way to resect a good amount of tissue from different areas and are not certain whether they need to go through my ear or my temporal lobe (the area of your brain just behind your ear). (2) They can monitor the growth using frequent MRIs and other scans. This would mean scanning every two months and monitoring changes. I'm already close to the two-month point, so that is the reason they've scheduled another apopintment in late March.

Right now they've completely changed my medication and Dr. Stenson is hoping that the news meds give me some relief. One of the major changes is that I am now on a pain killer that is designed to alleviate pain in nerve endings. I am only taking one a day right now, but I will gradually move up to taking the full dose of 3 a day. They are very hopeful that this medication will relieve some of the discomfort in my face. I already think it is working a little with only 1 a day; however, it is making me very tired.

Please continue to pray for the doctors (and me) as we make important decisions about the next course of action. My spirits are definitely a little better after Tuesday's visit and after reading all your comments to the last few blogs. I really appreciate those of you who continue to check in and comment (thanks especially to you Kimberly T. It means a lot that you checked and are praying).

I'll try to keep everyone posted or have Alysia post when I can't.

Some Answers at Last. . .

2007-02-14T08:49:00.000-05:00

Ashli had another trip to Chicago yesterday, (Yes, she and Lori were crazy enough to brave the toll-road in this weather!) but still doesn't have access to a computer, so she asked me to log in once again. . .it seems like we are getting some answers at last.

First, I should mention that Ashli is feeling MUCH better about University of Chicago after yesterday's appointment. With their recent unorganization, it raised some concerns for everyone as to if this was really a place we wanted her/she wanted to be. . .it seems the appointment yesterday eased most of those worries.

Let me start out by saying, one thing I did not realize is that one of the biggest reasons the doctors are having such a hard time figuring out what this "growth" is, is b/c they are not familiar with the side effects of the Proton Radiation treatment Ashli had in Loma Linda. There are only a few sites in the US who even offer proton radiation, so part of the reason for the difficulty sounds like it is b/c of not knowing what side effects come from the treatment afterwards. It sounds like the doctors in Chicago are trying to work with Loma Linda to figure things out, but they are not having much luck, which leaves them to try to figure it out on their own. At this point, they still feel strongly they will need to do a biopsy of some sort. The reason behind this, is that the chemo and re-radiation treatment would have negative effects on Ashli's body and they don't want to put her body through the harsh treatment unnecessarily. Ashli is due for another scan towards the end of March. The doctors gave Ashli some new pain medication and nausea meds to try to hold her over until they can evaluate the next set of scans for any "change" and then proceed with deciding the right type of biopsy (nose--more invasive vs. temporal lobe--less invasive).

It sounds like they are headed in the right direction. It also sounds promising that they would allow Goshen to administer chemo in Goshen. If they decide upon re-radiation, that will be much touchier and Dr Haraf (I presume the radiologist in Chicago) will make the determination if he is comfortable with Goshen administering, but sounded less promising for the re-radiation.

So that is where we are at. Ashli's next appointment will be in late March. Continue to keep her in your prayers that her spirits will be lifted in the coming weeks to prepare her for what is ahead!

Thanks for your support and prayers!

--Alysia

Updating for Ash

2007-02-08T09:15:00.000-05:00

Hi Everyone, It's Alysia again, just popping in to give you an update on Ashli b/c she still does not have her laptop in working order yet.

Monday Ashli went to Chicago and met with Dr. Leonetti (Loyola) for a second opinion regarding the growth. Unfortunately, he said that based on her symptoms, he is pretty certain the growth is cancer. He (and the other doctors she has met with) all agree that they do not believe the growith is operable. Lori Cloud (God bless her) is taking Ashli next week to have another appointment with Dr. Vokes (University of Chicago) and a surgeon regarding the possibility of biopsying. One thing I know Ashli & Lori will question is why she should have a biopsy when they told her that regardless of the results, they will suggest chemo and/or radiation treatment. We all think it seems silly to put her through the trauma of a brain biopsy if their treatment plan will be the same regardless. Hopefully we will get some answers to that.

Here are some ways you can pray for her right now:

Pray for Ashli's spirits. I can tell they are deflating a bit. She needs to have some positive things happen to rejuvenate her and prepare her for what is ahead.
Pray that the doctor's will agree to allow Goshen administer the treatment so Ashli doesn't have to move again. THIS IS HUGE!!! She does not want to go through a "California" separation all over again when she is feeling horrible & alone. None of us feel all that comfortable about her having to live elsewhere either.
Pray for Ashli physically. She is mostly sleeping and puking she needs some relief of these symptoms to help her feel well and prepare her body for what is ahead physically.
Pray for clarity in the appointment and that they will ask the right questions. Pray that there is a logical explanation regarding the biopsy or that they can allow her to skip it and just move forward w/ the treatments.

Also I just wanted to say a big THANK YOU to those of you who have driven her to Chicago for appointments etc. It's a huge relief that she has other people in her life who are able to help out as well! Thank you so much! It has made things much easier for her and for all of us.

One last thing. . .I know at one point, Ash had blogged about the Old Spice contest my husband and I entered and we found out that we ACTUALLY WON!!! So to anyone who voted for us, or took the time to pass the info onto your friends etc we appreciate it so much! We are waiting to hear back from them now re: the itinerary we sent for our vacation this summer! So anyone who voted. . .THANK YOU! And pass the word along to anyone else you had vote for us!

---Alysia

Finally Some Info.

2007-02-03T20:28:00.000-05:00

So... we found out in an interesting manner what UCH's plan of attack is. After my meeting with Dr. Yamini on Monday, I was fully expecting to hear back from Dr. Vokes concerning his plan of attack. I didn't hear anything until late on Wednesday night when I received a phone call from Dr. Yamini's nurse. She wanted me to come to Chicago for another appointment on Thursday. When I told her it was simply too late of notice (she called me at close to 5:00 PM on Wednesday) She responded by telling me that it was really essential that I come because they wanted me to book a hotel room and they were planning to do a biopsy of my brain on Friday morning.

I laughed and told her there was no way they were biopsying my brain on Friday morning when Dr. Yamini didn't even think he was the surgeon who should be handling my case on Monday. Perhaps brain biopsies are a daily procedure for them, but not for the patient.

After turning down that appointment, I finally started getting some phone calls from Dr. Vokes people. Dr. Chung, his assistant called to share my PET results with me and explained that they really needed the biopsy because there was no other way to determine if the activity showing up on the PET Scan is scar tissue or cancer. However, Dr. Vokes did agree that even a biopsy would not be definitive and there is probably not a way to conclusively determine whether there is any cancerous cell growing in my head. I still have a number of questions for Dr. Vokes, so I scheduled another consultation with him on the 13th. Lori will be going with me and we will be preparing a list of questions to ask about their recommendations for treatment. I may go ahead and schedule the biopsy and just cancel if we decide not to proceed with it.

Meanwhile, I will be meeting with another surgeon, Dr. Leonetti to get a second opinion about whether or not I am a candidate for surgical resection. From everything we are hearing, surgery is simply not an option for me at this time.

I could really use prayer in a number of areas:

1. My spirit is really deflating. It is hard to keep a positive attitude and stay optimistic through all of this.
2. Wisdom to make the right decision. The biopsy itself is pretty risky due to the amount of radiation I've had on my head. Furthermore, they are recommending a second round of radiation which often has devastating consequences to the body coupled with chemo. Deciding on the right course of treatment is crucial at this stage.
3. My health. I've pretty much been alternating between sleeping and vomiting. I need a reprieve from that vicious cycle. I feel like I'm back in California (except that I don't have the lovely and entertaining Jeremy & Kristin by my side).

I'll try to keep updating as much as possible. Still no progress on the laptop (save for the fact that my man Kevin Edwards is working on it).

Still Nothing to Report

2007-01-30T16:06:00.000-05:00

For all of you who are logging in religiously to figure out what is going on with me. I still don't know! This is perhaps the most frustrating thing about cancer. I had another appiontment at UCH yesterday (Thanks to Jen who drove me all the way to Chicago in bad weather and had no companionship all day long because I slept virtually every moment of our trip). I met with Dr. Yamini, the neurosurgeon who they thought might be the one to do my biopsy (if, in fact, a biopsy were decided upon). I met with Dr. Yamini because they canceled my apppointments with the surgeons on Friday as they were ENT surgeons and ultimately I would probably need a neurosurgeon.

I had an MRI at 8:00 am and met with Dr. Yamini around 10:00. The hope was that my morning MRI results would be uploaded in the computer so that he could access them during our appiotnment. No such luck. He elected to review my past scans using the CD-Roms I keep with me in my medical records. He couldn't open those either. Instead, he reviewed the narrative reports of my scans. After reading them, he decided that perhaps an ENT surgeon should be the one to do my biopsy and decided he would need to discuss my case with Dr. Stenson (the same surgeon whom I had an appointment with on Friday but it was canceled in order for me to meet with him).

I still have not heard the results of my PET Scan; however, it must not show any metastases as that would probably give them some definitive answer as to whether or not this is cancer or scar tissue and they still seem to be proceeding like they have no clue what this really is.

Further complicating matters, I talked with Carol, a fellow ACC survivor (I think she has had ACC for over 20 years) about my case and where we're at now. Carol really discouraged chemo for the general reason that chemo does not appear to have much effect on slow-growing cancers and encouraged me to question the doctors intensely before considering to any re-radiation as usually the side effects are much more severe the second time around.

I guess ultimately I need prayers for wisdom in my decision making and a general peace about the next step.

Sorry. I sure wish I could let you all know more :(

Worst-Case Scenario

2007-01-24T20:41:00.000-05:00

The official results of my yesterday's PET Scan should have reached Dr. Vokes sometime today, but I have not heard any word on these results. I did receive a call from Maureen, the surgical oncology nurse, who informed me that the tumor board met and discussed my case yesterday. The board decided that my tumor is located in too tricky of a position to surgically remove and has decided that surgery is off the table. Instead, they are planning to give me more radiation coupled with chemotherapy. The theory being that my cancer is growing in an enviornment where nothing should be able to grow (7,600 rads of radiation should kill all living cells). Although they cannot confirm that growth is cancer rather than scar tissue from my first round of radiation, there is no way to determine what the mass is so they have to treat me as if it's the worst-case scenario.

There is still a slight possiblity that they could decide that it is scar tissue and give me some time before moving forward with chemo/radiation. That is contigent upon some good PET Scan results and securing Loma Linda's radiation records. We are having an incredibly difficult time getting these records from California.

So... at this point there is nothing definitive, but a likely course of action. Of course, both radiation and chemo. can be administered at Goshen, so I am going to request that they transfer the protocol to Dr. Wheeler so that I can be treated there. Pray that this works out as I do not want to be away from my friends and family for 8 weeks again (even though Chicago is much closer, it is still the same to me).

Chicago Bound

2007-01-21T17:15:00.000-05:00

Just wanted to update everyone with some more information. I am returning to Chicago for more testing this week. Dr. Vokes and his team want me to have another PET Scan and want it to be adminsitered at their hospital. My last PET Scan was at the beginning of December -- in the world of cancer 6 weeks is a long time. If there are no new metastases, it will be a good sign that the new mass in the base of my skull may still be just scar tissue. Dr. Vokes is worried simply because I experienced a change in symptoms and a digression in my facial nerve functioning about the same time that we discovered this new growth in the PET Scan that Dr. Wheeler ordered.

I am scheduled for the PET Scan at 10:00 (11:00 Indiana time) a.m., so please keep me in your prayers then. I also have consultations scheduled with Drs. Redleaf and Stinson (the surgical oncologists who work with Dr. Vokes) at 3:00 and 3:30 respectively. Dr. Vokes feels that, unless we can conclusively determine that this mass is scar tissue, they will recommend an aggressive course of treatment including radical surgery (to remove as much of the cancer as possible) and radiation coupled with chemotherapy. Although research shows that adenoid cystic does not respond well to chemotherapy, there is research that shows that chemotheraphy coupled with radiation increases the effectiveness of the radiation.

The good news is that this team comes highly recommended. The bad news is that I've already overwhelmed all my readers with the names of various doctors... if we end up working with UCH, we will be adding 8 news doctors to the mix (each doctor works with a partner and I would be involved with 4 separate teams).

I think one big area where I need prayer is in making a decision. I'm getting conflicting advice from each doctor. Ultimately, the one I trust the most is doctor Wheeler; however, he has deferred to Dr. Vokes and wants Dr. Vokes to make the recommendation about the next step. I have a second appointment with Dr. Vokes on Friday. At this point the team will have the results of Tuesday's PET Scan and will have conferenced together about my case. On Friday I will be given their recommendation for a course of treatment. Lori Cloud is going with me to this appointment, so pray for both of us that we would have the wisdom to ask the right questions. And especially for Lori because she has to relive so much of what they went through with Ali as she supports me.

There is another surgeon who was recommended to me by the Porsche family. I have been playing phone tag with his nurse trying to set up a surgical consultation. Everyone thinks that I should put that on the back burner for now and focus on what UCH recommends, but I still feel like my gut instincts have been good so far and I'd like to meet this surgeon before I hear Dr. Vokes recommendation as I am not sure he will even consider taking my case if I elect to go with a surgeon outside the UCH team. I would like to be able to propose that question at Friday's conference. I have an appointment scheduled with him on Feb. 5, but I called to try to reschedule it for sometime this week and was waiting to hear back from the nurse before everyone told me to hold off on Leonetti. I asked for an appointment late on Tuesday or early on Wednesday. If that could be worked out, I would have the opportunity to get a gut feeling for Leonetti prior to hearing the UCH team's recommendation.

I am still without internet access and can only update from someone else's computer. Unless we receive some new information on Tuesday, I probably will not update again until after our appointment on Friday or I will ask Alysia to log on and update everyone after Tuesday's appointment.

Thanks again for your prayers and support!
Ashli

One Down... Three to Go

2007-01-16T07:19:00.000-05:00

Karl drove me to Chicago yesterday and we had our first consultation with Dr. Panje (he's the first specialist I saw after my diagnosis in April). Dr. Press initially referred us to him becasue he is an ENT as well as an expert in head/neck cancers. Dr. Panje is the one who recommended Loma Linda for proton radiation and told me if surgery was ever an option, he'd be happy to see me again to make some recommendations.

Dr. Panje looked at all of my images and came to the conclusion that there is no conclusion. There is absolutely no way to determine whether this is scar tissue or cancer. The only option is to biopsy. Not only would the biopsy cause any cancer cells to grow, it would also be quite dangerous to go in, take tissue, and close me up again. If that were to happen, it would be better to go in and take out any masses that do exist. This is problematic because whatever is growing is attached to critical nerves. Ultimately, Dr. Panje thinks I need to see someone who is even more knowledgable about the current research on adenoid cystic. Guess who he recommends? Dr. Vokes. Fortunately, I have an appointment schedule with Dr. Vokes today.

I know everyone is anxious to hear what happens at these appiontments, but I have literally been on the phone 24/7. I will try to update the blog quickly (although I know we will not be getting back until late tonight) or I will get in touch with one person who can update everyone else. Keep me in your prayers today. Thanks!

Reliving a Nightmare

2007-01-15T03:03:00.000-05:00

So, I've basically had absolutely no internet access for the better part of January. My laptop has been with Circuit City for the last week and now it is going to have to get shipped into the manufacturer for repair. I probably won't see my laptop for over a month :(

The worst part of all of this is that MAJOR changes have taken place and I could not update you all. My symptoms (the bells palsy, problems blinking, bruising,) have been getting worse each day. I have been under an immense amount of stress trying to get everything ready so that we can move into the new house (move in is scheduled for Friday, but there is still a fairamount to be done).

More importantly, I feel like I am reliving the nightmare of relocating to California all over again. Dr. Wheeler believes that Dr. Vokes (the specialist he thinks is best- equipped to handle my case) will not be able to definitively tell whether or not the new growth is scar tissue or cancer. He will likely treat me as if he is dealing with the worst-case scenario and opt for an aggressive treatment. In all likelihood, he will advise me to go home, pack my things, and come back to Chicago for chemo.

I talked about this with Lori for a long time last night. Ultimately, I will follow the doctor's advice, but there is no reason my chemo cannot be administered at the Center for Cancer Care so that I can live at home. I would still have to commute to Chicago at least once a month/possibly be inpatient for a week or so, but at least I'd have the support of my friends and family during most weekends and even the full weeks of chemo where I'd be at home.

The prospects of where we're headed with treatment are stressful enough, but at the same time, my pain is also increasing. Dr. Wheeler decides to mail me refills on all my prescriptions and increase some of my pain medication as I am not really supposed to be driving at this point (my vision is really affected by the bells palsy). I wait and wait for the scripts to arrive, but they never show up. As it turns out, they are forwarded to California. After waiting all summer long for my mail to arrive in California (which it never did), my mail starts arriving there now that I'm home. Furthermore, many of my credit accounts have automatically updated my address to the temporary California address from this summer. Basically, I have received virtually no mail since April (save for magazines and junk mail). Because none of the mail has been returned to the sender, most of my bills have been sent to collections and my credit score has dropped by over 100 points in the last month.

In the midst of all of this stress (or perhaps because of it or perhaps because I've only gotten about 10 hours total sleep since Christmas [no exaggeration]}, my body is at its capacity with Decadron (my steroid). I think I mentioned in an earlier blog that, when Dr. Thornton prescribed steroids to help with my swelling/bells palsy, he put me on a rather large dose of Decadron. He advised me to only teach half days because he was worried that Decadron causes people to be so manic that I could snap on one of my students. He monitored me closely and asked if I was hearing voices, had suicidal thoughts, etc. each time he saw me (evidently he had recently had a patient (female, around my age, same dosage of Decadron) try to jump out a third story window because she thought she could fly.

Well... shortly before Christmas I started getting pretty manic and everyone around me definitely noticed something was off. I had two isolated episodes where I clearly heard a voice, but it was pretty humorous and not dangerous, so I told my close friends, family, and colleagues about it. We laughed and I told them to start monitoring me for a psychotic break. I was pretty much joking, but I'm pretty sure it actually happened sometime right around Christmas. I called Dr. Wheeler and told him I was a little concerned with where things were headed with the Decadron/stress/lack of sleep and, although he was out of town, they scheduled an appointment for me right away. The doctors who reviewed my case were certain that the Decadron was responsible for what was happening, and they felt it was imperative to get me off of it right away. The typical taper for Decadron should be 12mg to 0 mg in about 4-6 weeks. I would be going from 12mg to 0 mg in 5 days. Within 24 hours of tapering boff the steroid, my face was swollen almost as badly as it was last April, my friends, family, 17 year-old foster daughter, and colleagues had to literally take shifts babysitting me to ensure my safety and to ensure that I get some sleep.

Well... today I will take my last dose of Decadron. Even though I've only gotten about 10 hours of sleep since Christmas (honestly not an exaggeration), I have a little more clarity without the Decadron. I think once I get some real sleep and we are not stuck waiting to move into this house and waiting to find out what's going on with this cancer, I will be back to normal. I'm already a little more clear-headed without the Decadron alone (the trade-off is intense pain and an increase in the swelling/bells-palsy symptoms).

I'll try to end on that positive note. I just want all of you to know that there are many of you who have called over the last week and I have either not returned your phone calls at all, or called and not made any sense whatsoever. I apologize. It was a terrible time to lose access to the internet because I have definitely needed your prayers and even some tangible support with moving/getting the house ready, meals, driving me to appointments, etc. I think once I am able to get some sleep (don't worry... it is going to look like I stayed up until 3:00 to write this blog, but I've actually fell asleep typing it around 12:30 and with my finger on the letter l which has been scrolling across this screen for the last 2 1/2 hours while I took a nap), finish up the house so that we can potentially move in as scheduled this weekend, I will be back to my old self (maybe some of you will even want to re-think praying for that to happen and ask God to make a few minor modifications as he refines me :))

Not Enough Hours in the Week

2007-01-06T00:39:00.000-05:00

The house is progressing quite rapidly. Corlissa and I basically have the green light to move in whenever we're ready. I haven't been in any hurry because we are paying for apartment through January 20th anyway. I was planning to do a little painting this week, but nothing definite. I received a wake-up call from Coach Rost and some amazingly generous Memorial volleyball players who devoted an entire day of their break to volunteering at my house. So, I've been running around like a chicken with my head cut off getting supplies for the them and for several other pople who have set aside their own time/projects to help get this propery ready. It seems like it was Monday just yesterday and I feel like I've spent most of my Christmas break in Menards. I can't believe we're going back to school on Monday.

Thanks to all of you who have been helping out and I'll keep you all updated on our progress.

Please Vote!

2006-12-20T03:36:00.000-05:00

My sister, Alysia, and her husband are one of five finalists in the Old Spice "Effortless Adventure" giveaway. They were best friends, turned high school sweathearts, turned marriage partners and have been together close to 10 years. I've silently watched a number of marriages and they really do have the makings of a great one. You can vote for Alysia & Tory once a day using the following link. They are the couple standing in front of the race car (Yes... I know...I love them enough I still claim them)

http://www.oldspice.com/_os/effortless_adventure

*If the link is not active, you can simply copy and paste the link into your address bar.

Thanks Everyone!

In No Real Hurry

2006-12-19T03:27:00.000-05:00

I have not yet called Dr. Vokes, the head/neck cancer specialist the Goshen team recommends. I found some good information about him online, but it does not appear to me as if he is a base of skull surgeon. Alysia got some good information about him from the Rare Cancer Alliance. I'm still waiting to hear back from Dr. Luu and the team in California. They are going to try to determine from the scans whether it is disease or scar tissue. My gut tells me they will not have a definitive answer either, but Dr. Luu has already said he has a recommended surgeon for me. In the meantime, I'm really not in such a hurry. I've gleaned from everyone that I will likely be having a major surgery and it is probably worth my time to really research the surgeons. Meanwhile, several people have recommended some alternative therpaies such as colonics (removing toxins from the body) and acupuncture. I was a little skeptical about acupuncture for spritiual reasons (I've heard great feedback about the treatment itself). I stumbled upon a referral to an acupucnturist and it turns out that he is a 7th Day Adventist (Loma Linda is the biggest 7th Day Adventist facility in the U.S.) and a true Christian. He basically went on record and told me that he sensed God wanted me to be healed. He also told me that he felt that, between the colonics and the acupuncture, my face could return to normal within two months without any surgery at all. I've already had two treatments -- no marked changes at this point, but I'm hopeful.

My symptoms -- particularly problems with my equilibrium -- have been intensifying over the last few days (I did not disclose all of this in the last blog because it had just started and I did not want to worry anyone (including myself) prematurely). I have passed out/blacked out three times (two times in the shower when I was already sweaty and overheated from the steroids and the addition of the hot shower water seemed to put me over the edge) and again today when I was leaving Dr. Press's office. I did not actually fall down, rather I ened up getting myself onto the ground just before the fall. I waited it out for 10 minutes or so and was fine.

I am definitely stumbling around everywhere when I walk, tripping over things, and I have had to brace myself/sit down on several occasions to prevent myself from passing out. Despite all these amazing signs from God, I was starting to get pretty worried about this -- if I'm in this condition, I shouldn't be driving, living alone, etc. My only consolation was the fact that I've had some pretty intense ear pain lately and thought maybe there was a chance my ear is infected (the last few times I've had it looked at, it has been filled with fluid, but no sign of disease. Dr. Press worked me into her schedule today, and she is pretty convinced I've got an infection. She took a culture to be certain, but she also went ahead and put me on the antiobiotics. I started my first dose this evening. Pray that once the infection clears up, my equilibrium will stabilize and return to normal.

Another area where we (Corlissa and I) could use prayer relates to this crazy housing opportunity we've stumbled upon. Ultimaely, I feel like I am just throwing money away in an apartment. I could afford a small, modest house for the same monthly payment. I just have not felt good about the prospect of locking into a mortgage considering the uncertainty of my health. Furthermore, if I were to move, I'd want to be in a house that had long-term possibilities. I could not afford a mortgage on that type of house right now (I'm looking at a significant raise when I get my master's in the fall, though). Anyway...Jacquie(Rost) told me about this crazy housing opportunity. All signs point to the fact that God might have led us to this. She has a friend who purchased a house to "flip", but since the market slowed down, ended up losing money on the deal. He lowered the purchase price significantly (almost $20,000 less than it's appraised value), but it still hasn't sold. He's now making two mortgage payments and losing additional money every month. In an effort to re-coup his loss, the man is interested in selling the property on land contract but is still willing to take the lower purchase price. I put in a phone call to him shortly after I heard about the house. As it turns out, there is another girl that was likely going to buy on land contract, but she really could not afford the payment for the first year. Marti (the homeowner) was going to negotiate and let her pay a rental payment for the first year with the agreement that she would be able to assume the entire mortgage at the end of the first year. When Marti found out I was interested he responded by saying that he heard my name and just felt like he needed to talk things through with me before forging ahead with this other girl. I've been to the house three times since our first conversation. My parents have both been there. Basically, everyone feels there is pretty much no way I can go wrong with this deal. It is in move-in condition and would not even need to be painted in order to be livable. The only financial expense I'd want to make fairly quickly would be furniture for the basement (it is huge and finished and would be our primary living space). I'd keep what we're using in the apartment as the furniture for the formal living room upstairs. That expense is not immediate; however, it would be really nice to be able to use that space downstairs as quickly as possible. The yard is a mess (we would need to re-seed or lay new sod in the spring), but most of it is just manual labor -- raking, tree/branch removal, etc. The only drawback to this whole deal is the fact that Corlissa and I finally feel like we've settled into this apartment -- her room is decorated, we've got everything in its proper place. The idea of packing up, cleaning a new place, working on a yard, making decorative choices -- perhaps as soon as next week, is a little daunting. It seems like just yesterday we called in favors from every Memorial coach and all my friends' husbands :) (God Love you all!) The decision should be made by the end of the week. Please pray that I make the right one. I have a real sense of peace aboout this house and all signs point to the fact that God had a hand in bringing us the opportunity. It's still a big, intimidating decision, tough. Oh... I forgot to mention the most appealing thing about the house: It is within walking distance of the Rosts's. This is good for me socially as I spend a good chunk of my time there. More importantly, it puts me in close proximity to someone close should I ever need medical help, have an emergency with the house or would be convenient in the event that I had to be gone for a few weeks for surgery. Corlissa could probably just stay alone with the Rosts that close by.

As you can see, my steroids are still in full effect. I truly appreciate those of you who are praying for sleep. I want you to know that I feel your prayers are being answered. I've been sleeping off and on closer to 6 hours a night. A huge improvement from the 4:30 am - 6:30 am night routine I was on :) I seem to have reverted back to my old ways for this evening, but I can also tell that my body wants to sleep... I'm simply not cooperating becasue I have a lot of things I think I need to get done (think being the operative) and I'm really hungry for an omellette right now.

I so appreciate all of you who are faitful readers and prayers!

Back to Square One

2006-12-13T09:26:00.000-05:00

I apologize to those of you who were expecting an update yesterday. I've actually had news since Monday night, it's just that it is so insignificant that I could hardly bear the thought of updating.

Basically, I was referred to another specialist. The Goshen doctors feel like they simply cannot make any recommendations without knowing whethere they are dealing with scar tissue or disease tissue. The biopsy is a risk they are not willing to take (I get the impression that some of this is related to liability issues). They do feel that the type of biopsy I would require needs to be performed by someone with extensive expertise/experience in dealing with the nerves. The team recommended Dr. Everett Vokes. He's at University of Chicago Hospital. Dr. Wheeler commented that he is "the best head and neck cancer specialist in the United States." I've looked up Dr. Vokes and he's got a great resume. He specializes in some treatments that could be really beneficial to my case and his secondary area of expertise is lung cancer (which is benefical in my situation as ACC tends to metastize to the lungs when it re-appears around the 10-year mark).

Ultimately, there is likely going to be some major surgery in my future. The team wants me tol have the best possible surgeon -- whether it be to do the biopsy or to resect the scar tissue. Of course, I totally agree. My frustation is that I've supposedly seen three of "the best in the United States." They can't all be the best can they? I mean, my first consulation was with Dr. Panje in Chicago. He offered to see me again post-radiation and give me further advice -- particularly if surgery became an option. I think he would simply make a referral to a surgeon, though. It is actaully a surgeon who was recommended by the Porsches (a Memorial volleyball family whose daugther had some growth in a similar location and had an incredibly successful surgery) Dr. Luu (my California doctor) is in the process of looking at all my tests and telling me his recommendationl. When I was in California, though, he told me that there is only one surgeon in the United States see -- this guy is located in Arkansas (or some other obscure state that may not really exist). How the heck are all three of these guys the best in the United States? I think there should be an oncology pageant or something. Give one doctor a crown, send me to him, and let's call the rest finalists. So, I'm going to call this doctor and ask some questions, but ultimately, I think we are at a standstill for months now. Defintiely nothing happening before Christmas.

Meanwhile, I am really struggling with steroids. For the most part, the steroids have been easier this round than last spring. I can definitely identify the negative side effects, but they have not debilitating. The sleep issue has been the worst. I think the loss of sleep is what is actually exacerbating my eye and perhaps causing my face to digress a little more. I get annoyed at minor things more easily and am perhaps more honest than normal, but last round incited many fights with Corlissa and a lot of hurt feelings. I have not had that issue this time and don't think I've been as "bitchy" as I was then. The biggest annoyance is the physiological drive to be in perpetual motion -- either talking or doing. I cannot shut my mouth (I'm annoying everyone around me) or stop moving. In some ways, that brings with it some positives.

I've asked Dr. Wheeler about the possibilty of going off the steroids. Dr. Wheeler basically flat out told me that I could not stop taking the drugs (he is usually more open to discussion about the topic) In fact, he was hesitant to let me change doses or start taking only two doses. His only concession was that I could take my last dose at 3:00 PM instead of with dinner.

However, the last few days have brought on some concerning changes. My face has really swollen in the last two days, my eye is going crazy, my equilibrium has been off (I have had two or three episodes of dizziness which has actually caused my equilibrium to be off to the point where I look like a drunk walking), and I've become more forgetful/clumsy (this was a major problem last spring but I had not been experiencing it until this weekend when the other changes started). My gut instinct is that my body is just crashing due to lack of sleep. I think that is the reason the side effects are really intensifying. On the bright side, my system crashing has forced me to sleep. Anyway... last night I finally slept. I slept from 1:00 until 5:30 this morning. I probably need to see if I can simulate this again for a few days and see if the side effects become more manageable but ultimately I am left wondering what to do if something does not change.

My biggest request is prayer regarding sleep. If I could find some happy medium with sleep, I truly believe the steroids would become a non-issue. I believe that my physical symptoms would probably be more manageable as well. I did ask about the possibilty of some sleep aid coupled with the steroid, but Dr. Wheeler says that is not a good idea. I need pray and am open to all suggestions.

Secondly, I ask you all to pray for guidance regarding my next step and finding the doctor who will ultimately be my surgeon. I trust Dr. Wheeler and have no hesitation with any recommendation he makes. If I have to choose between two of the best and one is in Chicago, the other in Arkansas. The choice will be easy. But I feel like there is a third choice on the table and that leaves me deciding between two surgeons who are both in the Chicago area. I would love it if there was some clear sense/guidance in this matter!

Sorry to make you all wait for more of the same "we still dont' have anything concrete" news.

The Scoop

2006-12-08T01:26:00.000-05:00

So...we've got some PET results, but they are really inconclusive. Essentially, the PET Scan definitely confirms that there is an area with some new growth in my brain. The results are not clear about what the growth actually is. Evidently this has caused upheaval at the Center for Cancer Care. Dr. Wheeler and another physician have reviewed the results and truly believe that what they are seeing is either the growth of scar tissue of the residual effects of treatment. However, one of the radiologists and a fourth physician are convinced that it looks like cancer and that it appears to be metastisizing. Everyone does agree that we need to come up with an a definitive answer.

A major conference concerning my case has been scheduled for Monday. All the radiologists and oncologists on staff will be reviewing my case and coming to a collective decision. It is not a matter of them voting and deciding to go on record and say "Oh... it's just scar tissue," Instead, they will debate about the best possible way to get conclusive results. In all likelihood, the team is going to recommend some form of biopsy. This is not anyone's first choice as biopsying cancer is not usually a good option. Cutting into the cells usually gives them new life and the ability to grow. Even if that does not happen, it usually results in swelling /irritation of the already-delicate tissue. Adding insult to injury is my recollection of my diagnosing biopsy last April: I started off the week as a normal-looking gal. Four days later mouthwash comes shooting out of my mouth when I gargle, I can't put on makeup without holding down my eyelid, and I can no longer smile.

Further complicating this situation is that they will need to biopsy tissue from the area surrounding my brain stem. This could mean an invasive biopsy where they actually cut into my skull and resect tissue (probalby not inpatient, huh?). There are several different biopsy options that the doctors may bring to the table... as a general rule, the more invasive the biopsy, the more likely they are to get the definitive answers taht they need.

The bottom line is that I could be facing some form of inpatient surgery as early as next week. On the bright side, there is probably a good chance that it is something they will do in Goshen. I would expect to hear from Dr. Wheeler regarding the team's recommendation by the end of the day Monday. We are also overnighting the MRI/PET scan results to California where Dr. Luu and a team of Loma Linda's doctors will also conference and make a recommendation. I will try to update the blog as soon as we know something.

Pray for wisdom for each team of doctors as they meet. I would specifically like to pray that both teams (Goshen and California) reach the same independent decision. But the bottom line is that, in my heart, I trust Dr. Wheeler. I have an unwaivering trust in him that I cannot explain. I thank God for that. For that reason, I would requst taht some of you even pray specifically for wisdom for him.

Of course, I am definitely not excited about the prospect of an invasive biopsy (especially in light of the fact that it will probably exacerbate the problems with my facial muscles), but in my heart I truly am not restless about this.

Thanks in advance to all of you who I know are already on their knees and surrounding me in prayers. Words cannot describe the peadce that that brings.

Still No Word

2006-12-05T19:02:00.000-05:00

For those of you who are checking... no news yet. I did call Center for Cancer Care today and left a message for Dr. Wheeler asking about the results. Hopefully I'll get a return call tomorrow. Thanks to those of you who continue to hope, pray, and check.

My Baby

2006-12-03T07:40:00.000-05:00

Last night was the Winter Dance. I volunteered to take tickets at the door. Perhaps I'm a little biased, but I truly believe my daughter was the most beautiful girl in the room. Ricky didn't look too bad either :)

Taking pictures last night reminded me of prom. I don't think I've even posted any pictures from that, so here goes:

Nothing to Report

2006-12-02T01:21:00.000-05:00

Well... the PET is over, but there is no news to report. Normal results would probably take until Tuesday or Wednesday of next week, but I have a feeling Dr. Wheeler will try to get them earlier. I will, of course, update as soon as we know something.

I have not had much nervousness or preoccupation leading up to the PET Scan; however, shortly after I received my injection, I was overwhelmed by some pretty negative gut feelings about the test. This is a little concerning becasue my gut instincts are fairly reliable. The thoughts were pretty fleeting, and I am not meditating on them by any means. Pray that does not happen. It is neither productive nor helpful.

There could be an alternate explanation for the pessimism. My colleague's grandson (5 years-old) passed away this week after battling his own brain tumor. He was diagnosed several months before me. It is just such a sobering reality -- I wouldn't wish this on anyone, but Cancer needs to be more selective. Please keep The Raval Family in your prayers. I cannot fathom what they must be going through.

Fasting is Not an Option

2006-11-28T04:35:00.000-05:00

Okay... I forgot to mention that you've got to fast for 12 hours prior to a PET Scan. This does not work well in combination with steroids.

Not only did I fast in preparation for the test, Goshen called me around noon and told me that the machine was down and that my appointment would likely be a littler later. In order to take my mind off my fasting-induced rage, I initiated a cleaning frenzy. The house looks great. Got another call two hours later that my PET was cancelled and rescheduled for Friday.

Just wanted to update because I know some of you will be checking for results. The scan has been moved to 11:00 am on Friday. I'm guessing that means we won't hear anything on results until Monday.

Pray for our PETS

2006-11-26T09:54:00.000-05:00

My test is tomorrow at 2:00 PM. It should be able to definitively tell us what's grown inside my head since September. A few of my friends have commented that my intellect has seemed to grow by leaps and bounds over the last two months; however, I am pretty sure my freshmen English classes are not that intellectually stimulating and the lunch conversation in the Language Arts office sure isn't doing it :)

Obviously the test is really important. Pray Hard.

PS - I went to Wal-Mart at 3:30 am this morning. Then, I had a suddent urge to come home and make an omellette. Why don't drug companies include stuff like this on the warning labels for prescription medication?

2006-11-19T06:14:00.000-05:00

The Upside Is.... More Latenight Posts?

2006-11-19T01:33:00.000-05:00

Dr. Wheeler was out of the office on Friday, but he was concerned enought about these changes in symptoms that he wanted me to come in and meet with one of his associates. The essential concern was that such a sudden change in symptoms was probably brought on by some internal change. An emergency MRI was ordered and Dr. Wheeler called me after hours to tell me the results: there is definitely an area on this MRI that appears larger than September's MRI (If it tells you anything... my appointment was scheduled at 9:30 am, and I ended up leaving Goshen after 5:00 p.m).

He does not want me to panic because it would be highly unusual for new disease to be able to grow and thrive this soon out of radiation. He believes there is a greater possibility that what the MRI shows is a residual effect of treatment or scar tissue. No matter the cause, the effects are still devastating. The loss of ability to control my face was by far the most horrific effect of this entire process for me. The only possible solution the doctors could come up with was to put me back on Steroids for awhile to see if they could reduce the inflammation that is compromising my trigeminal nerve (the nerve that is responsible for all these facial movements). Steroids were probably the second hardest cross to bear. It appears I'm headed back to a life of 3:00 am omellettes, manic cleaning frenzies followed by loud fights with Corlissa when my attempts at perfection cannot be maintained by her 17 year-old living habits, and latenight posts. The only other upside to steorids is that I predict I may have all of my Christmas shopping done before December 1.
(I've already informed the doctors that I will be tapering off if I don't see some major changes pretty quickly.)

Dr. Wheeler is going to schedule another PET Scan for me sometime at the beginning of the week so that we have some definitive answer about whether or not this is more cancer. Those test results will probably guide our next steps... obviously a huge area where fervent prayers are needed. He also wants to discuss with me the possibility of of a specialized surgery called radial surgery. I've done some basic research online and found that he is probably referring to stereotactic radial surgery which is often used to treat tumors found in the head. From what I've read, it sounds like this is an alternative to the more intrusive brain surgeries. Obviously I need to hear much more about this from the doctor before any decisions are made. Furthermore, I do not know if he considers this the next step regardless of what the PET Scan shows.

Okay...I think this post should suffice all you active readers who have felt jipped by my lack of consistent posting. Standby for regular updates.

Request

2006-11-16T08:56:00.000-05:00

Okay... for those of you guys who are still checking this thing and praying. I have a request. Around Monday or Tuesday of last week, my facial nerves started regressing. I noticed that my smile and eye were drooping a little again. A couple of days later, I started getting some numbness on the right side of my lower lip/chin. These symptoms have only been intensifying. I have an appointment with Dr. Wheeler tomorrow and will definitely run all of this by him then and update you with his resopnse. These facial symptoms were probably the most horrific part of this whole cancer experience for me, though. Furthermore, it all started happening about when things were taking a turn for the better and I was just beginning to feel like I was getting back to normal. Your prayers about this would be greatly appreciated.

No Immunity

2006-10-30T19:30:00.000-05:00

Evidently my last post was incorrectly titled. I've decided to title this one "No Immunity" as I am beginning to wonder if proton radiation also completely wipes out your entire immune system. I have had two bouts with the flu, at least three colds, and perhaps two days of blissful health in the last two months.

Anyone have any great ideas for how I can boost my immune system? I've tried some (supposedly) good vitamins. Am taking Emergen-C (concentrated Vitamin C in crystal form) and Airborne (Sure wish I was the teacher who had invented that one. It is probably working for him because it is patentend and now he's rich and doesn't go to school where all the germs are. If I could retire, I'd probably be healthy too). The good news is most of the infections that are spread at EMHS are STDs, and I'm definitely immune to those because I'm not having any S.

Okay... that was the quick update. I'm open to all suggestions unless they involve eating seafood.

Immunity

2006-10-11T12:11:00.000-05:00

Okay... my immune system sucks. I have seriously been sick almost every 5 days like clockwork. I am beginning to consider wearing a face mask at school. Now I've got a terrible cold and have pretty much been in bed for the last few days. UGH!

Other than the constant ailments, things are going well. The volleyball team is having a great season and school is going as well as can be expected. Hope to see some of you at the benefit on Sunday!

Getting Results

2006-09-27T15:37:00.000-05:00

I'm not even sure why I'm writing this. Since I've been updating so seldomly, most of you have probably stopped checking the blog altogether.

I wanted to update everyone on some medical results. I've had a series of bloodwork done and met with an endocrinologist. Essentially, all of my hormones are currently normal so there is no evident effect on my pituitary gland. My doctor did say that sometimes it takes awhile for the pituitary to show such impact, so we will check again in 6 months. In a way, this is good news. On the other hand, it would be nice to have some explanation to my skin going haywire and shedding hair like a dog.

I also had my first MRI last Thursday. I forgot how excruciating such tests are. I was in that stinking machine for over an hour. Good thing I'm not too claustraphobic or I would have had a panic attack. I just kept thinking, "Hey... at least you're not in California with your head bolted to a table." Dr. Wheeler's (my radiation oncologist at Goshen who will be in charge of all of my follow-up care) nurse called today to say that Dr. Wheeler reviewed the results and didn't see any apparent cancer in the MRI. He did say there was some significant scarring due to the radiation, though. I got this information via voicemail, so I want to ask some quesitons and verify what I heard, but this is obviously great news!

I'll try to be better about updating.... but maybe you shouldn't hold your breath or anything.

Another Update (Finally)

2006-08-29T12:05:00.000-05:00

I have been receiving numerous complaints for not updating more frequently. I guess I haven't been updating because there is really very little to say. Of course, everyone wants to know if the radiation was successful. I do not even have an MRI scheduled until October so it will be awhile before we know anything.

I am back teaching at Memorial (full time). I have a sub who works with me in my classroom everyday... that is helping to alleviate some of the daily stresses of teaching. Additionally, I have a pretty flexible workday schedule. I'm also trying to get some hours in shadowing our school social worker for my MSW. I elected to drop my IUSB evening classes, so I'm actually pretty free during the weeks (save for volleyball).

Honestly, it has been very hard coming back to school. I am not myself and the mere fact is making things quite depressing. I know that my students are not getting the typical Ms. Hepler, but I guess I have to cut myself some slack in this arena.

The bottom line is that it is really hard to function when there is little joy left in your life.

Whirlwind

2006-08-12T06:28:00.000-05:00

Life has been pretty hectic since I've been home. It seems like I cannot sit still -- everytime I do I feel like I'm back in California and virtually alone. In my defense, there has been a lot going on. Corlissa's car broke down three times. I came home to a very messy apartment. Finally, we're moving into a bigger apartment. A huge thanks to all my heavy-lifting coaches!

I wanted to take a moment to give everyone a little update. It seems like the question of the hour is "So...what happens now?" Well... basically we wait. Radiation stays in works in one's system for up to a year. I did not have any scans while I was in California to determine whether or not the radiation was shriking this tumor. In fact, I am not scheduled to have any scans for another 6 weeks. I will post more about that as we gain information.

My understanding is that you only undergo radiation once. I am not scheduled for any further treatments, however, there was some discussion or surgery if the tumor were to shrink significantly. Basically, we know absolutely nothing at this point. Sorry:(

I am scheduled to return to school on Monday. Monday and Tuesday are teacher days the kids come for a full day on Wednesday. I cannot stand the thought of sitting at home, but I am definitely not back to my old self and nervous about whether or not I can handle a full day with kids. I am also scheduled to take classes two nights a week this fall, but for the sake of my energy and bank account, I think I am going to have to drop those.

Forgive me for being so delinquent in posting!

I AM HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2006-08-03T08:13:00.000-05:00

I have no known luggage or personal belongings to speak of, but I am home so who even cares?

The Sun'll Come Out

2006-08-01T19:48:00.000-05:00

....TOMORROW!!!!!!!!!!!!!!!!!

Does anyone have the ability to make the next 24 hours go by any quicker?

So Close I Can Almost Taste It....

2006-07-31T18:16:00.000-05:00

Monday is nearly over. That is probably good news for all you readers out there, but for me, that news is terrific.

As a lovely friend pointed out, when I wake up tomorrow I will cut the number of days I have to spend in this God-forsaken state in half!

I cannot wait to wake up on Wednesday morning. It will be the last morning I ever have to wake up in this place. I'm so anxious, but I am forcing myself to wait to pack until tomorrow afternoon.

Time went by as rapidly as could be expected this weekend. We worked hard to occupy the minutes. On Friday Andrea (Helmuth) came over and went to lunch with my mom and I. Then, we all packed up in her Camry (it felt good to ride in one again) and headed to Hollywood. We saw some tourist attractions and took a 2-hour tour of celebrity homes. The houses were pretty cool, but at this point, if given a choice between a 56 million dollar home in California and a one bedroom apartment in Indina, I'd probably choose Indiana (unless I was able to sell the California property and use it to buy the entire city of Nappanee).

Saturday we went to a movie with Kristin and Sunday we went to Mosaic Church in Pasadena with Jeremy, out to lunch, and then to dinner and another movie in the evening with Jeremy and Kristin.

There is little else to report. The machine worked fine this morning (this is the first Monday in three weeks it has not been down). So... thanks to all of you who are praying. Keep the prayers coming!

LAST FULL WEEK OF TREATMENT IS OVER!

2006-07-28T14:09:00.000-05:00

Yipee! Need I say more?

P.S - Keep the prayers for the machine and the time to go by quickly (especially this weekend) coming!

Specific Prayer Request

2006-07-25T18:30:00.000-05:00

Hi everyone...Well, I am starting to be able to see the light at th end of the tunnel. That is definitely a good thing; however, it is making me really antsy.

Thanks to everyone who said a prayer for the machine on Monday. It came back up and I was able to get treated.

My mom has just returned and she will be staying with me until we both fly back home next week. That brings up another MAJOR prayer request. We went ahead and booked out tickets today. Please pray that the machine cooperates and we are able to get all treatments between now and next Wednesday. Wednesday will be a big day to pray because we will need to leave straight from treatment to comfortably make our flight.

Also, pray that the time goes by quickly. Right now every single hour seems to be lasting a day. This is really true on weekends. Most of you are thinking, "It must be nice to have a couple days break from treatment." In all actuality, weekends crawl by because those are just days that I am not counting down treatments.

Thanks again for everyone who is supporting me in prayer.

Down Again Part II

2006-07-24T13:12:00.000-05:00

I just took Holly back from a long weekend visit. Well...actually, we drove all the way to Loma Linda because there should have been time for me to get my treatment in and then take her to Ontario airport. Unfortunately, the gantry (the machine that treats me) is down again.

They told me to go ahead and take her to the airport and go home and wait for them to call me. I just called to check in. The machine is still down. Everyone who is reading this, please, please pray that it goes back up and stays up so that I can get treated today. I cannot bear the thought of adding another day onto my stay here. I need this machine to pull through for the next week and a half for me!

Down Again

2006-07-24T13:11:00.000-05:00

More Resigned than this Title Can Convey

2006-07-17T14:53:00.000-05:00

I just re-read my mom's blog. I think she pretty much hit the nail on the head. I am resigned and just putting one foot in front of the other. There is nothing I want more than to just pack up my stuff and come home. Words cannot convey how strongly I want that last sentence.

I just have to say that this whole thing totally and completely sucks.

Resigned

2006-07-14T11:13:00.000-05:00

This is Ashli's mom, Perri, reporting from California. I know that it comforts us to picture Ashli not really on a vacation, but in a cheerier picture than life as she experiences it here. If she had much energy or interest in eating, there are things here she could enjoy, but at this point I think that she is just surviving the monotony of the endless treks to the hospital for treatments. The area where she is living is "nice", but I agree that green mountains would be more attractive. The drive to the hospital mostly consists of smog coated road signs, a lot of traffic moving quickly, or crawling, and a lovely landfill beside a railroad yard that goes on for quite a distance. I have the feeling that she has hit a wall. It is like a marathoner (not that I have had any personal experience with that) who has hit the spot where all he is doing is continuing to put one foot in front of the other. The end may be getting closer, but it is out around the bend and the finish line is not in sight. He's not sure if he can continue to run for the entire race, but he numbly continues on. Or it is like a pregnant woman who knows intellectually that there is a baby in there, and that the discomfort and pain will come to an end, but it feels as if it will last forever and maybe the doctors have made a mistake and a watermelon seed taken root in there, and there really is no baby for all of this trouble. Ashli only has one wish; and that is for all of this to be over, and for her to be able to come home. These are the most important things for you to pray for her:
1. That the machine giving her treatments does not go down and cause her any more delay.
2. Most importantly that time passes as quickly as possible for her. The end is in sight for us, but not for her.
3. She is able to eat enough to get some nutrition and that the nausea goes away.
4. She feels God giving her the strength that she alone does not posess.
5. The treatment are a total success with the most minimal damage.
Ashli is resigned to being out of control; unable to go where she wants, do what she wants to do, and feel the way she would like to feel. However, Ashli has not resigned from the battle and has plans for her future. Intellectually, she knows that she will come through this with a new appreciation for home, family, friendship and God's grace. I am resigned to getting on that plan tomorrow without her. It goes against all of my motherly instincts. I want to pack her up in my suitcase (and she just might fit in there) and take her on my plane home to where she wants to go. However, that is not for her best, and who knows what havok we would cause with her radioactivity setting off all of the security alerts at LAX!

Stuff

2006-07-11T03:25:00.000-05:00

I couldn't think of a creative title for this blog as I do not yet know what I will be writing about. Therefore, I title it "Stuff" because I will probably be writing about a variety of topics.

First of all, I wish I could thank personally every single person who showed up in support of me/my family at the benefit on Saturday. Obviously this is not possible since I was not there and don't even know who all showed up. I must confess, up until this point I have remained completely silent about the benefit. I told Alysia and Steph that I pretty much wanted to be left out of the loop on it. I am pretty sure writing about the benefit on this blogsite would have made me a eertifiable beggar. Really, not writing about it was just a way to maintain some semblance of dignity in this whole thing. Since it's over (and I'm done "begging"), I feel free to write about it. I can tell you all that my family certainly felt overwhelmed with support from the variety of people who showed up. Forget the well-wishes and the financial support, it was just good to know that such a plethora of people are praying for us.

I cannot close this without talking a little about Stephanie, a.k.a. Steph, a.k.a. "Stiffy" to those closest to her. Steph and I go way back. All the way to middle school. She was "going with" the boy I was destined to marry. Suffice it to say, I hated her with a passion. We continued this tumultuous relationship all the way through high school (She maintains I was a judgmental "good girl". I that she was a bad-girl jock. I "prayed" for her regularly. Which, in the land of senior high youth group really translats to I "talked about" her regularly (unless, of course, you are a more mature "Christian" than I was). Anyway, after high school, Steph and I both ended up at Bethel College. She roomed with Jen Hunsberger, my long-time best friend, so we were forced to get along. After awhile, I think we both grew to find the other quite tolerable. So tolerable, in fact, we end up partnering in Shupe Dormintory's first-ever half-naked rollerblading expo. Okay, we were pretty much the only two in the expo and the other girls in the dorm didn't really appreciate it (especially Kelli and Mindy since we had to seek refuge under their covers when Janet Seeker came looking for us), but it was basically the only cutting-edge thing we could do without getting kicked out of BC.

Steph and I wound up living together for the remainder of our Bethel careers. I consoled her as she barfed over our Egle toilet because of the intensity of the pain from her ACL injury. She consoled me and helped me find refuge at the Staples' when we got kicked off campus for a week. Even though we haven't always stayed in touch as regularly as either of us would like, we're always able to pick up where we left off. I think that says something about a friend. For those of you who don't know, the idea of this whole benefit was birthed by Steph (and Eva, I think). Jacquie told me that, when she talked to Steph on Sunday, she said she felt like she had been "run over by a truck." I can relate to that. I worked so hard to organize the St. Mark Youth Group's Senior Banquet, that it took a full week for my mind and muscles to recover. So... Stiffy, I want you to know that I truly appreciate all your hard-work and effort. The fact that you would give so much of yourself for me is quite humbling.

Okay.. on to another topic. I really appreciate those of you who have been praying for my physical well-being. I must confess, however, there is one type of sickeness that far exceeds the effects of nauseau/vomiting. That, my friends, is homesickness . Although I have had a string of visitors, nothing compares to home. Nothing beats sleeping in your own bed, comforted by your own pillows, surrounded by your own smells. Everyone keeps telling me "only three more weeks...", but I just really want to come home now.

BENEFIT TOMORROW NIGHT!!!

2006-07-07T09:56:00.000-05:00

This is your last reminder about the benefit tomorrow! My how the time has flown by. Ashli is half way through her treatment and we are hoping the benefit tomorrow night will be a success.

The benefit is tomorrow night (July 8th) from 5-7 pm for the dinner portion and from 7-10 pm for the band.

The benefit is at Dal Mar Catering Hall in Nappanee. Here are some basic directions for those of you coming from Elkhart/Mishawaka area.

-US 20 By-pass to SR 19 South
-SR 19 South all the way into Nappanee. (SR 19 & US 6)
-Continue South on SR 19.
-Turn left (East) at the next road which is Lincoln Street. Lincoln is just before the RR tracks.
-Dal Mar will be not even a half block down on your right side. There is an open parking lot on your left you can park in.

If anyone needs more specific directions, I would encourage you to mapquest it or give me a call 773-5348 is home or 354-0746. I am on vacation this week so am NOT checking email regularly.

Thanks again hope to see you all tomorrow!!!

Alysia

Excommunication

2006-07-03T10:54:00.000-05:00

If the United States were a subdivision, California would be the annoying neighbor who doesn't take care of his lawn. You know, everything is always dead, brown, and dirty. I vote we have an association meeting and excommunicate Cali from the neighborhood.

Guest Writer

2006-06-29T12:36:00.000-05:00

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

2006-06-26T23:20:00.000-05:00

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!

2006-06-22T13:37:00.000-05:00

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. . .

2006-06-20T08:37:00.000-05:00

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

2006-06-19T06:59:00.000-05:00

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

2006-06-13T19:34:00.000-05:00

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

2006-06-09T10:22:00.000-05:00

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

2006-06-07T20:50:00.000-05:00

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

2006-06-06T23:42:00.000-05:00

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

2006-06-05T17:58:00.000-05:00

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!

P.S.

2006-05-29T20:09:00.000-05:00

Q: What one personal belonging could I not live without right now -- it would be a total and complete disaster if it malfunctioned at this point?
A: My laptop?

Now guess what one belonging of mine has decided to go caput?

You guessed it!

That ranks right up there with slicing open the arterial vein in my left index finger, bleeding out for four hours, and getting stitches on the inside and outside of my finger (Mind you, I'm left-handed).

On the Move

2006-05-29T19:44:00.000-05:00

I've made some great headway this weekend. It looks like we may have a lead on a car for me to drive in California. I have a priority hold on a furnished apartment(I'm still not convinced I can't find a better deal, but unless something happens in the next two days, I'm going with it), I actually feel like I might be able to stop and speak to some people this week. It would be really nice to just enjoy these last few days in Elkhart (Okay..that looks ridiculous in print. Summer in Elkhart. Summer in California. I feel like a teenager again. It's all fine and good if it's your own idea, but if someone forces you to do it, well... that'a a whole other story, huh?)

Today is the first day I've actually been able to relax and not think about this move. Approximately 75% of my apartment is packed and ready to go. My mom came over yesterday and helped me pack up most of the kitchen. The only things left in our cupboards are dishes and the food we plan to eat in the next two weeks. This morning Nicki (Ms. Homo) came over and helped me pack up my closet. All that remains are the clothes I'm packing in a suitcase to take with me to California and the shoes that Corlissa and I share (I just wasn't ready for the negotiations to begin yet today. This whole parental/sacrifical/unconditional love thing does not extend to shoes, right?).

I relaxed at the Rosts in the afternoon. All of the baseball coaches sat downstairs(probably belching and farting and talking about baseball). All of the volleyball coaches sat upstairs (no overt belching or farting) and talked about volleyball and social issues. We were actually only disrupted once when we learned that one of the boys relegated to the downstairs had plugged up the upstairs toliet. There was a great deal of finger-pointing, but no one has yet admitted their guilt. I learned that Scott Rost is not only dead sexy, but handy with a plunger. It was good to get back to some semblance of a familiar routine.

To my lovely students at Memorial. This week is my last week at school. I'm only here 1/2 days in the morning. Make sure you stop by and say farewell/"have a great summer!" I'm disappointed that I will not be able to attend the actual graduation ceremony (I lose three hours flying back, and the earliest I can get into the South Bend Airport is 10:35 PM) and many of your open houses. I feel like I'm missing out on a lot, but the bright side is that this whole thing is going to get me home in time for school next year!

That's it for now. I'll keep you posted.

It's About Time

2006-05-27T17:04:00.000-05:00

Hey everybody...It's about time I'm back online, huh? I cannot tell you how crazy life has been. I've spent virtually every moment of every day facilitating my move to California. Today is the first day where I feel like I've actually made some real progress. Ironically, all I really want to do is spend the last few days I have at home with the people I love. Instead, I end up glued to the phone or this computer. YUCK!

I received a call from Maryellen (my nurse at Loma Linda). My plan is ready to g(You know "the plan." The one Bloomington couldn't start until July 25. The one that takes 4 weeks at a minimum for a team of doctors and physicists to complete? Hmm...must be a different type of "plan" if it only took LLUMC a little over a week?)and I am on track to start radiation on Monday, June 5. We have a couple of apartment options at this point, and I will probably work hard to firm something up from California when I'm there the first week of treatment. I think it will be better to see these places in person if possible.

As you all know, I really wanted to start on June 12 so that I could finish out the school year, be here for graduation, etc. Dr. Luu was not going for that. But Maryellen promised to get me the earliest possible appointment on Friday morning and the latest possible Monday appointment so I can fly home that weekend. The girls will stay in the apartment for the last week of school, and we will be moving on Saturday, June 10. I think this will be my best move yet. You see, I have doctor's orders not to lift anything over 10 pounds. I am picturing myself in a director's chair with a glass of lemonade barking out orders. Hey... if any of you out there have absolutely nothing better to do on a Saturday, we sure could use some help with the heavy lifting. The good news is I am anal retentive. Our boxes are color-coded and labeled according to where they are going.storage. I'm working hard to make it as seamless as possible.

Most of you have been patiently waiting for some news/photos of Hawaii. It's here! For those of you who don't know, Kelly Crocker (Moses) was my college roommate for two years at Bethel. We weren't always the greatest roomies, but we ended up terrific friends and have kept in close contact over the years. I was in her wedding, she was in mine (okay...it's not true. It just sounded good). Anyway, her husband, Curt, is in the Air Force and they have been stationed in Misawa, Japan for the last few years. Curt & Kelly have one daughter, Jordan, who is 2 1/2 going on 12. She is a quite bright and pretty indepdendent. Well, Jordan was having some problems with her eyes that could not be treated on base, so they shipped them off to Hawaii to Tripler Army Medical to a pediatric opthamologist. So, the Moses family had already been in Hawaii for one week when we arrived. Jordan was diagnosed with three separate eye conditions. She is scheduled to have surgery back in Hawaii in the fall and the other conditions she will likely outgrow.

Having a reunion with Crocker in Hawaii was especially meaningful. First of all, she's been away from home/friends/family through a number of difficult times. Secondly, she's had a lot on her plate in dealing with Jordan's medical concerns. Finally, maintaining a close friendship over seas and sushi can be difficult. Kelly has some great photos of Hawaii; however, she wanted me to issue this disclaimer: She is a proud mother. Don't get annoyed if you end up scrolling through lots of pictures of her kid.

I also want to issue a disclaimer regarding my album. You will not see many photos of me. In fact, it was incredibly difficult to include the ones I did include.
My face was pretty swollen from the flight and change in weather. Furthermore, my best friend, Bells Palsy, decided to tuck himself into my suitcase and sneak on the trip. My nerve damage was at its peak in Hawaii. I really prefered to stay out of pictures altogether, but Kelly is almost as stubborn as me, and I ended up in a few. I posted them, but I give you fair warning. It is not pretty. Secondly, this camera that the EMHS math/language arts departments gave us was amazing. So, be prepared... I was trying to act like a real photographer on the trip.

To see our pics, copy and paste the link into the address bar. You can create your own kodak gallery account and it will keep a copy of these albums in a section called "Friends' Albums" or you can choose to view the albums without signing in. Either way, I would recommend that you view the albums as a slide show rather than clicking on individual pictures (hindsight is 20/20).

Hope you enjoy the photos!

Our Hawaii Photo Album
http://www.kodakgallery.com/I.jsp?c=10ajd8i6.9rsxmva&x=0&y=-crlnzn

Kelly's Hawaii Photo Album:
http://www.kodakgallery.com/I.jsp?c=9g4g2jt.244xwalt&x=0&y=y8dugh

BENEFIT SCHEDULED!!!

2006-05-26T08:18:00.000-05:00

Hello Once Again Blog-Readers~

Ashli has been a busy-bee responding to all your phonecalls and emails! Steph Reed & I have also been busy planning the benefit. Here is the official information:

WHERE? Dal-Mar Banquet Hall: 159 East Lincoln Street, Nappanee, IN

WHEN? Saturday, July 08, 2006. Dinner served from 5-7pm. Live Entertainment from 7-10pm

WHY? To help Ash cover costs for lodging, airfare & misc med expenses while she is in Cali.

COST? Spaghetti Supper: Adults/$20, Kids 6-12/$10, Kids 5 & Under/Free

Advanced Ticket Sales are available. You can purchase tickets from Steph Reed (574-903-0355) or myself (574-773-5348). Jacqueline Rost & Kristin Baker @ EMHS are going to coordinate ticket sales to interested students before school is out.

We are also pre-selling raffle tickets for a 27" TV that Monaco Coach was generous enough to donate. Those tickets are $5 each or 3 for $10. You don't have to be present to win the TV raffle.

There will be door prizes, a Silent Auction, a table of baked goods available for a donation & raffles. There are TONS of ways for you to help out (see the help wanted blog below)

As I said earlier, Steph & I are going to try to make this GREAT for Ash, but we WILL need your help. So far we have not been overwhelmed with responses from people offering to help out, so if you are planning to be there & can lend a hand. .. PLEASE post a response to that blog or call one of us and we will add your name to our list and get in touch with you closer to the benefit!

One thing I should note: Since Ash will be in CA for treatment during the benefit, we can't promise that she will be present. . .however, she will be with us in spirit even if she can't be physically present. Much will depend on how she is feeling at that time.

Thanks again for all the prayers for Ashli & our whole family. We truly appreciate all the things you are doing for us!

Alysia

Home Sweet Home (for two whole weeks)

2006-05-23T01:53:00.000-05:00

Made it back home safe and sound. Souvenirs brought back: A load of cheap Hawaiin t-shirts, one right hemisphere of face visibly swollen to twice it's normal size (a combination of the weather and flying), more steroid-induced side effects (had to taper back on for the trip; tapering back off again starting tomorrow), a possible curse cast upon me by the Coalition of Waikiki Street Vendors (see full story below), a forged friendship with Dryden Mitchell, lead singer of Alien Ant Farm, whose bags were also lost by Northwest Airlines (it's good to know they don't discriminate) coupled with a standing offer to attend a concert as a special guest, and over 350 digital photos (a few of which could do the EMHS Art Department or perhaps even VanderLende/Cloud proud) which will be uploaded to Snapfish.com for everyone's viewing pleasure.

Street Vendor Full Story:...Be on the lookout for a possible curse cast upon Ashli C. Hepler by the Coalition of Waikiki Street Vendors after they refused to return two bathing suits purchased for Corlissa and Keesha despite the fact that the woman had given me her word that, if i put it on my Visa, my money would be refunded immediately if I returned the suits. After I simultaneously named and she refuted every plausible problem I might encounter upon returning the suits (I've been all over the third-world, nice try, folks), I charged them on my Visa. When I went to return them, I was told "No refunds under any circumstances. Who told you this? Only exchange." I asked for the person who sold me the suits. She got on the phone and said she never told me such a thing. (out with being a part of "ohana", in with being called a bold-faced liar). I asked for the manager. No manager until Monday morning9I called Visa. They would suspend the transaction if the company would verify the authorization code on the receipt. I called the number of the company listed on the receipt. Not a working number. So, I proceeded to walk up and down a crowded Seaside Street, stopping every tourist and giving them strict instructions not to make a purhcase from this vendor. I interrupted every sales transaction. A woman and her 4 daughters walked away in the middle of a purachase (I think the nerve damage to my face coupled with the fact that steroids make you drip sweat like a Gatorade commerical coupled with the fact that I've become quite comfortable behaving like a stark-raving lunatic actually came in handy this time) I'm convinced at least 10 major purchases were lost because of me. Crocker was actually embarrassed enough to walk away (if you know her, you know what I mean). Well... the world is a better place. There are now three Hawaiians who know how to use the "return" function on the Visa machine. I will prevail! Who do these people think they are dealing with?

Anyway...I'm back home... Only a few hours before I have to start booking flights, leasing apartments, packing boxes, and preparing to move across the country for the summer. No pressure, huh?

Thanks in advance to everyone who is working behind the scenes to facilitate the move. A huge shout-out to the Lisa Lashbrooke, whose first-hand knowledge of world of air travel saved me and my dog-tired laptop visits to over a hundred different travel-related websites. One for Anna Banana, who has graciously volunteered to communicate with my friends and coordinate my California visitation schedule, To a friend who, even as we speak, is probably fighting with a tape meausre to figure out the dimensions of her basement so that my children will live in thier own one-bedroom, carpeted apartment. Another for Alysia, who is logging in as me and turning my blog in to a veritable Classified Ad, Still another to Steph Reed, who birthed the concept of the benefit and is working her butt of to bring the idea to fruition, To the Carpenter's Tools, who have agreed to play one or two songs as a reunion special at the benefit (I'm pretty sure it took the most convincing to get my dad on board) which summons up some of my fondest childhood memories. To Jeremy & Kristin, who won't even be married for another six weeks, but have already adopted a sick child. To Danna, who sends me an email virtually daily with a new proposal of how she and Bobby can help. To Nancy White, who called just to lend me some support but ended up breathing life into the words of a book I've been reading ("There's No Place Like Hope," by Vickie Girard') given to me by one "Coach Pie" who bought me the book that, less than 20 pages in, has already transformed me (she even offered to sit and read it to me if my eyes got too bad). To amazing co-workers who faithfully read, comment, and encourage despite the fact that they are authentic communicators and a blog can be quite one-sided. This list could go on for days.... To be continued!

HELP WANTED:

2006-05-22T14:36:00.000-05:00

Benefit Postponed: It will NOT be the weekend of June 2-4. Encountered problems obtaining facility on such short notice. New date To Be Announced at a Future Date: Likely a Saturday in July or early August. . .

HELP WANTED:

We have position openings IMMEDIATELY in the following areas:

Housing/Transportation Specialist:
Duties: Willing individuals will assist Ashli C. Hepler in finding free or low cost housing in the Rancho Cucamonga, CA area. Transportation is needed also. Miss Hepler is willing to pay a fee for use of the vehicle as well as insurance costs. Several individuals have already applied for this position & were to be in touch with "contacts" in California. Please do so ASAP! This housing and transporation will be needed as of June 04, 2006.

Donation Locator:
Duties: Locate willing businesses in the greater Elkhart, IN area who are kind-hearted enough to donate merchandise or goods to a benefit for Miss Ashli C. Hepler. Qualifications are a suave sales personality, a Can-Do attitude. Knowledge of Miss Hepler's "contacts" is a plus, but not required.

Manual Laborers:
Duties: Assist in setup/teardown of tables, chairs, sound equipment etc. at benefit.

Organizational Team/Administration:
Duties: Assist in organizing food, beverage, place settings, & other administrative tasks at benefit.

Monetary Specialists:
Duties: Collecting money, making change, giving receipts to benefit attendeees.

Donator/s of Goods:
Duties: Donate goods for benefit. Items needed will likely include: Paper products, plastic silverware, beverages, possibly side dishes, baked goods to be sold for donation.

You will enjoy being part of a well-oiled, highly-organized, benefit throwing machine. Much help will be needed to make this a success! We are counting on YOU to be a part!

All interested applicants please respond to:

Alysia Lutz
Telephone: 574-773-5348
Email: toryalysia@yahoo.com

Aloha

2006-05-19T22:39:00.000-05:00

Do you know what stinks about being in Hawaii? We are only here for 5 days! Seriously, this is one of the most amazing places I have ever been. I'm already dreaming of some way to come back for a lengthy vacation. I think the Make-a-Wish Foundation needs to consider helping kids-at-heart.

Let me tell you all why Waikiki is the perfect vacation spot for Ashli Hepler. (1) We are within one block of one of the most amazing beaches I have ever seen -- it looks like something out of a travel brochure. The weather is gorgeous. Hot, but there is a good breeze. The water is warm. There are plenty of people sunbathing who look way worse in a swimsuit than I do, so I am fairly certain I am not the focal point of all the honeymooner's jokes. (2) The view from our hotel room is to die for. I'm sure some of you are imagining palm trees, sand, sunsets, romance. Scrap all that crap. When I look out off our balcony, guess what I see? Just guess? You won't even believe it! Louis Vuiton, Hermes, Fendi, Prada. All these boutiques line the street of my hotel. There is a Macy's within one block. Puma, Adidas. I have never been so happy in my life. Hey, I know I can't afford anything, but it is just nice to know that, maybe, just maybe, Jay-Z is buying Beyonce some extravagant gift within a one-block radius.

I have tons of stuff to tell you guys. I'm trying to be like Anne or Jeremie Riggleman and be a real photographer on this trip. I honestly think I've got some good pictures -- mostly due to the generosity of the EMHS math and language arts departments, who purchased an amazing digital camera, batteries, and huge memory cards for us to document this vacation:) I will try to post some pictures on here ASAP. I've already got them on the computer and ready to go!

Oh... I forgot to mention... guess what restaurant is adjacent to our hotel? The Cheesecake Factory! I think we're headed there right now. Life is good.

Do You Believe in Miracles?

2006-05-17T15:02:00.000-05:00

I know you are all waiting for my sister to update her blog regarding her Cali trip. Unfortunately, you are stuck with me, Alysia, the not as creative middle sister. Ashli is probably somewhere in the high sky right now on her way to Hawaii. . .not a care in the world. . .ok, so if any of you know my sister, you know that is probably the FARTHEST thing from the truth. In reality, probably one of two things is happening right now: A) She is fast asleep catching up on the much needed rest, enjoying that new pillow purchase or B) She is diligently working on her laptop composing letters to the Department of Insurance explaining why she is the perfect candidate to push a government proposal making health insurance practices/procedures easier on patients.

Last night our family went to sleep knowing that our parents would likely be using a credit card to charge a hefty $9600 to Loma Linda's facility so that Ashli could get her fittings done and get treatment underway. In Ashli's last post she commented she wasn't putting God in a box just yet. If she had, He clearly took that as a challenge & burst forth from that box tearing it to shreds. At 2:00 am I woke up and laid in bed thinking about the whole pre-authorization deal. The more I thought about it, the more livid I became. Why should MY FAMILY have to pay for some screw up that some Anthem employee made?? So, being a woman of action, I got online, looked up Ashli's account information and composed the entire conversation that I would have with dear Stephanie in pre-authorization this morning. This morning on my way to work I called Ashli's new case manager who promptly put in a call to Stephanie. (Miracle #1) Then I put in a call to Stephanie. Then I checked in with Loma Linda and realized that THEY had put in a call to Stephanie. In my emailings with Alane @ LL I mentioned my frustrations etc. At around noon today IN time, sweet Alane emailed me again and said that "THE PAPERWORK IS IN!!!" (Miracle #2) No credit card was needed!! No form to complete for Ashli to basically "sign her life away" in case Anthem fell through! I emailed Alane telling her that she was an answer to prayer today. . .she emailed the reply below:

"I was praying last night & I just let God know that I didn't want to have to collect the money from your sister & to please help me figure something out. He sure helped. I also extended an invitation to Ashli in regards to attending my church one Sunday. . ." (Miracle #3)

I then heard from Ashli about 20 minutes later on my lunch calling to tell me the good news! She said that her fittings had gone off perfectly. She said that it was crucial that she remain absolutely still during her fittings b/c any miscalculations in those could mess up the target for her radiation treatments. She said it was a VERY strange sensation and that she just felt a peace and did not move ONE MUSCLE the entire time! The doctors said it was one of the best, clearest CT Scans they ever did! (Miracle #4) She got out in plenty of time and when we spoke she was in transit to the airport to hit the skies.

I then got an email from one of Ashli's contacts at the school mentioning that she had seen Doug & he asked "if Ashli was checking her email, becuase he had some good news for her!" (I believe Doug is the school's lawyer) Clearly many people were involved in getting this ball rolling. Poor Stephanie probably was just SO sick of hearing about Ashli Hepler that she dug through the pile on her desk, dusted it off and decided to get half a dozen people off her back in one shot! No matter who all was involved, one things is clear. . .God orchestrated the whole, crazy scheme!

I'll ask you all one more time, Do YOU believe in miracles?

Almost a Californian

2006-05-17T08:14:00.000-05:00

Believe it or not, this crazy shack of a Comfort Inn we booked actually has wireless internet access. I tried logging on to update the blog and check some emails only to find that the signal drops to 1.0 mbps (It should be around 54.0 mbps) about every two minutes. Ultimately, I keep getting disconnected and can't stay on long enough to get my update posted.

Not to fret... I'm no dummy. I will prevail! I am typing this update in Microsoft Word and am leaving the window open on my screen. Then, when I find at least a 10-second window of decent wireless connectivity, I'm going to log on and simply hit ctrl c + ctrl v and copy and paste this update right into my blog. I should have thought of this last night. It's already 8:00 a.m. Indiana, and I'm sure many of you are wondering what happened at yesterday's consultation. Here is the lowdown:

Dr. Quocc Luu (he is Vietnamese by nationality, but born and raised in the United States) at Loma Linda University Proton Treatment Center is now my primary radiation oncologist. He has officially accepted my case. Not only that, he wants to get this thing rolling right away. He cannot believe how long it has taken to diagnose this thing, and was mortified that I've had the diagnosis since April and haven't begun radiation yet.

I am returning to the office this morning. I have an 8:30 a.m. appointment to get my radiation mask fitted and then complete another CT Scan with the mask on. Dr. Luu and Maryellen (his/my primary nurse) will then start running the plan immediately. Dr. Luu's goal is to have the plan completed by May 30, 2006. At first, he proposed that I return to California to start radiation on that day. I explained to him that I was hoping to start on June 12th so that I could be at home for the last week of school (and possibly teach full-time, administer exams, etc.), that week.

Long, Intense Side Note: The 11th is also the date I can officially move out of my apartment. We will be packing up most of our belongings and putting them in storage. Corlissa (and possibly Keesha) will be based at Karl & Danielle's for the summer and we are going to turn the basement into a makeshift one-bedroom apartment for them (Karl & Danielle had plans to finish the basement a little at a time. We're going to use some of the money I am saving by not paying rent at two separate residences for two months to get this ball rolling a little early. Karl & Danielle are going to be out-of-town off some of the summer. Corlissa will be in summer school ½ days for most of the summer and will be gone two full weeks at the beginning of July. Everything is really up-in-the-air with Keesha, but I'm planning the schedule as if I have to find coverage for her as well. This is why the U.S. History Trip is so important. Keesha has to take summer school to stay on track to graduate. This class counts for both the fall and spring social studies credits and frees up two slots in her schedule for her to make-up classes that she's failed due to attendance/her harried life. If Keesha is in the same class as Corlissa, I don't have to worry about transportation to and from summer school, they can hold each other accountable regarding homework, getting up on time in the a.m., and I know they have a writing assignment each day with a partner. Not only that, but we know that she will also be gone those first two weeks of July on the trip. That would give Karl & Danielle a nice little break in the schedule. Somehow, someway we have got to make this work out. There was one open slot left for the trip, but I think they are hesitant to add her because it is so late in the game. Keesha's mom wants her to go, too. We will have to hustle, but we can have her paperwork in and ready and meet all the deadlines that have been set for the other kids if we only get the green light to get going! That is going to be one of my top priorities the second I get back in town. It doesn't really matter whether Keesha is added to our family temporarily or permanently. I am about to become these girls' official "educational custodian" and will be listed as the primary person in charge of making educational decisions, calling in absences, and keeping them on-track to graduate. It is my responsibility to make sure this girl gets her diploma and graduates with her class. She is very bright. She tries to "save face" by acting as if she doesn't care about school, but she cheks STI (our online gradebook) almost every single night from home. She generally starts her homework immediately when she gets home from school, and I've seen her work on homework for four straight hours without complaining once. I know there are other teachers who see past the "save-face" attitude she gives, but it is just frustrating that, for the most part, the circumstances which got her in this predicament were totally and completely out of her control. UGH!

Back to the radiation schedule/prognosis: Dr. Luu thought the 12th would be fine, but everyone sensed his hesitancy. In fact, Jeremy and Corlissa were there for the entire appointment and Corlissa actually spoke up and said, "Girl, if you don't start when he wants to start...." We all agree that there is no significant risk in waiting the extra two weeks; however, it is not optimal. My other issue is that I would only be at at home a partial week before returning to live in California. That is simply not enough time to find a place to live/car to drive out here. Ultimately, we've settled on a compromise. I will be returning to LLUMC and starting radiation on June 5, 2006. Dr. Luu wants me to undergo an 8-week dose of proton radiation. I can't leave the second it's over, though. They generally keep patients a week longer for monitoring. Any way you look at it, I'll still be home by the beginning of August and possibly even by the July 31 date that I had planned. The only difference is that I'm going to have to tack on an extra week at the beginning. We've also decided that I'm going to stay with either Jeremy or Kristin for the first week I'm here (their wedding isn't until July 1, 2006, but their new place is available on May 26, 2006. They still haven't settled on who is moving into the new place until the wedding, but I will be living with whomever that is the first week of treatment. My goal is to narrow the housing search down to three properties before June 2, 2006, fly out the 3rd, visit each property and then work on getting the lease signed and moving in the next week. We are looking for a furnished 2BR so that all I have to do is have my clothing and personal care items shipped out to Jeremy and Kristin's and we can move right in. If you know me, you know I like to be one step ahead of the game. So, I stopped at JcPenney last night and bought an extra set of luggage. I way over-packed for Hawaii, so I took out several summer outfits, toiletries, etc. and re-packed us for this trip. I'm actually packing two separate suitcases that Jeremy and Kristin are going to keep in the apartment for me. It is now feasible that I could just fly out on the 5th and have enough clothing to last me this entire week if I can't get things shipped here by that date. It will be much cheaper to ship things like shampoo, makeup, etc. than to buy stuff here because tax is like 8% out here right now.

On the bright side, Maryellen (great nurse in Cali), has already helped out a ton with some housing connections and helped us decide that Rancho Cucamonga is definitely the best bet as far as my central location. She also told me that the American Cancer Society will reimburse me for all mileage I drive to and from treatment while I'm here. It's just a matter of contacting them for the right paperwork and having LLUMC verify it. She has been instrumental in getting this ball rolling and keeping it rolling. I have a really good feeling about her. Many thanks to all the others who have put in phone calls on my behalf to help secure housing and transportation. I will definitely be getting more info. and getting in touch with your contacts. Some of you have called and left messages for me to call you. I am not sure what will happen with my cell in Hawaii, but since Kelly has been emailing me/updating her blog from HI, I'm fairly sure there will be some way for me to do so as well. Can those of you who have contact names/numbers email them to me? I definitely want to start making contacts even from HI if I do have cell phone service.

On the not-so-bright side, one area where Dr. Luu differed from the other specialist was his outlook for my physical condition during radiation. He expects me to have a pretty major burn on my face and that I will be in significant pain. They will work hard to manage the pain, but the medications could be intense enough that I would be ordered not to drive. Essentially, I am going to need to have a contingency plan to cover this. According to the schedule I've been working out, it appears as if enough people are planning to come and stay with me that I could feasibly have visitors each day I'm in California (hurry...there are only a few slots left for you to book your no-lodging-cost vacation to Cali this summer!). Sorry, you may have to drive me to radiation for 30 minute each day as compensation for the free place to stay :(

Digressing from bright to not-so-bright into the forces of darkness news: Anthem still has not signed my pre-determination paperwork to approve Loma Linda as my treatment facility and Dr. Luu as my treating physician. Alane (my insurance specialist in California) says that the original pre-determination was coded incorrectly all along. She isn't sure if the mistake was made on Bloomington's end or Anthem's end, but the treatment listed on the original form was not coded correctly ever. Since the codes are changing, we have had to start the process over from scratch and were told that the same 4-6 week delay is quite possible. Amazing people have dropped everything to try to intervene with Anthem (again). No one knows where we're at with this paper, but it I am scheduled to meet with Alane at 7:30 a.m. (10:30 for most of you in Indiana) to settle this. Since Anthem will just have started the business day, everyone is skeptical that this paper will get signed in time. In fact, we worked out a plan yesterday, and I am planning to write a check for $9,600 to Loma Linda University Medical Center at that time. It is LLUMC's policy that the patient must pay for 20% of the entire course of treatment up-front if they want to proceed with appointments before securing insurance approval. Thus, the figure is a little higher than expected. Either way, it just doesn't make sense to do wait. The appointment is on the calendar, waiting will cost us valuable time, and I would return from Hawaii and have to turn around and fly right back to LA the next day to get this done. That will cost more money out-of-pocket in both the short and long-term. I just don't see any way around it. UGH! No one needs to panic, though. We've got a plan in place to cover the funds. I am not about to bounce a check this morning or anything. We've basically witnessed one miracle after another leading us to California. The day is young. I'm not ready to box God in just yet!

I'm scheduled to leave the hotel at 6:45. Should have plenty of time to spare to get to LAX for the flight because they think the appointment will only take an hour and I'm the first one on the schedule. Pray for smooth traffic on the west-bound 10. No accidents and we should even have time to go out to lunch!

I'll be offline until we arrive in HI. We're schedule to land at 5:20 p.m. local time (It's three hours later than CA, six hours later than you). I probably won't be back in touch until tomorrow (but it will likely be evening on Wednesday your time before I would update the blog or start trying to call people). Until then!

Add one to the list of miracles: I got a decent connection! I can't change the font at all, so who knows how this text will appear on our screen.

Cali or Bust!

2006-05-16T13:45:00.000-05:00

Hi guys! I'm sitting in Glendora, California right now. Our flight was on-time and we had no problems at all in the air. Corlissa had never been on a plane, but she didn't even seem that nervous. About 10 minutes into the flight, we were both out. I slept for the first three hours and then worked on my laptop. Corlissa slept virtually the entire flight.

Jeremy and Kristin picked us up at LAX and now we're back at their place. When we touched down, I had a voicemail waiting from Stephanie, the Anthem enigma. She basically ssid that "since I've chosen to switch facilities" (those were her words and I don't think I was imagining the tone...maybe she's tired of having 5 different people call her about my case. Well... maybe I'm tired of paying $85/month in premiums + $250/month for office copays for health insurance that is supposed to be there for me when I need it. After all, I am paying for this. It's not like I'm asking you're getting approval to throw me a surprise bon voyage party for my trip to Californai) and it so happens that this new facility I've "chosen" codes the treatment differently, Anthem will not transfer the treatment to a new facility. In essence, they must start the pre-determination paperwork over from scratch and she needed me to be aware that they are still experiencing the same 4-6 week delay that we were dealing with the first time. Well... brace yourself for even more phone calls, Miss Stephanie. Maybe when the dang paper gets signed, you can get back to your other cases.

Anyhow...I called Mary Ellen and asked her to arrange for me to meet with financial services. I've just made up my mind that I'm not leaving without this appointment. It just doesn't make sense. I've had this procedure done at Goshen. They sent me a statement and asked me to verify that I've received all of the servies listed. They were: CT Scan, Mask, MRI, PET Scan, etc. The total cost of services rendered was a little over $5,400. That's not a second mortgage or anything. Maybe they'll let me pay them in two installments and I will hope and pray Anthem can reiumburse me directly after this is approved if we document that the visit has been paid in full. Maybe financial services at LLUMC has done this before.

Right now I'm using Jeremy's laptop to update you all. I know everyone wants to know what's going on. I brought my laptop and wireless card along for the trip. I'm hoping to find a way to connect both here tonight (after I've met with the doctor) and also in Hawaii. I seriously doubt you will hear from me tomorrow, though. We are pushing the time limits as it is. We are leaving in about 5 minutes to head toward Loma Linda. Jeremy thinks we've got plenty of time to spare. After my appointment, we're going to check into a hotel about 1 mile from the hospital and then go site-seeing in Rancho Cucamonga and possible a couple other places. Corlissa gets to sleep in during my appointment tomrrow and then we'll head straight to LAX to catch our flight to Honolulu (we arrive about 8:00 pm HI time).

Keep checking in!

Why Sleep Now?

2006-05-16T03:43:00.000-05:00

It is so pointless to go to bed now. Maybe if I just stay up, I'll be able to sleep through the entire flight. We had dinner with Dave & Cary at Cheesecake Factory last night. Now that is a start to a good trip. I just want everyone to know that Cary Dameron Schwartz now has a "Master of Science" next to her name and I am one of the first people to see the evidence on her diploma. For those of you who don't know, I'm one year out from getting my masters (hers is in school counseling; mine in social work) and there is some question about whether or not I will be able to continue with my cohort and stay on track to graduate in May due to my radiation schedule this summer. So, for me, her completion of this degree has special significance.

Anyway... we stopped by Brookstone and I bought this amazing travel pillow for the plane. They were discontinuing the line, so it was a bargain. (And yes, Mom. I do recall you telling me, "When you buy something just because it is on clearance, you still spend more money than you would have if you had not bought it at all, so you're really not saving money, you're spending money you wouldn't have spent in the first place." And I heard your voice quite clearly in my head, and then Cary told me to buy it and Corlissa looked at me like she thought it was a good idea, and well...now I have a really nice travel pillow so that at least I'll be comfortable when your fiscal mini-lessons replay through my head for the duration of my flight :)

I just want to say that I am annoyed with everyone who has been commenting. I have been so good. I have been replying to your comments. I answer your questions, respond to your statements, and ask questions in return. Does anyone bother to answer these comments in turn? NO! I wasted all that insomnia re-commenting for nothing. Can you all start looking back over comments and letting me know what is going on here?

I'm going to get in the shower and get ready for my flight. I had to take a double-dose of steroids for the flight (to prevent swelling) for the day, so maybe I'll scrounge through Dave & Cary's fridge and see if they have the fixings for one of my famous bacon, egg, and cheese (must be velveeta because it melts properly) omelettes. I might even serve them breakfast in bed (if you know Dave & Cary, you know this isn't really gonna happen because I would be terrified to enter their bedroom unannounced).

Next in line to be annoyed by a visit from Insomniac/OCD Ashli:

Snoop Dogg and Krissy

P.S. - Don't forget to read the post just below. It is new as well and chocked full of interesting information/prayer requests/details about my crazy life.

Blink of an Eye

2006-05-16T01:45:00.000-05:00

Alright... if you've been following this blog religiously, then you already know that my life can easily change in the blink of an eye. If you happen to skip a day or two in logging on, I'm probably in a different part of the world with a different diagnosis and maybe have even completely changed my identity.

Right now I'm sitting in Dave & Cary Schwartz apartment in Indy. I should be asleep, but I woke up panicked that I told Anne & Joel the wrong time for our outbound flight to LAX. Guess what? I did. Tomorrow morning (I mean in a few hours) my lovely sister and her husband are picking us up and taking us to the Indy airport. We will be flying into LAX and are scheduled to arrive at 9:35 California time (I think Cali is 3 hours behind us, so it will really be noon our time). Jeremy Lugbill is picking us up at LAX. We were planning on just chillin' in Cali and seeing some sights but...

The way this has all worked out is just so crazy that it is hard to absorb! Loma Linda University Medical Center (one of the two remaining proton radiation centers in the United States) already has my records and is seriously considering taking my case (they were uncertain at first because of the whole "stage 4" label). Dr. Luu (Sorry... new name. Basically the Dr. Thornton of California) doesn't normally see patients on Tuesdays, but given the circumstances, he scheduled a consultation appointment with me for today. So, sight-seeing: out. Hightailing it west-bound from LA across the 10 to Loma Linda (near San Bernardino) to LLUMC/Dr. Luu: in. Consulation should be a snap. I've only had like 3 of them already. I'm not sure what he can tell me that I don't already know and have bound in my color-coded, chronologically-ordered medical binder.
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Cali's proton protocol is about the same as everyone else's. Consulation, followed by planning appointment (where they do a CT scan of you in the mask which they use to run numbers to get measurements to write their radiation plan), followed by 3-4 weeks of wait time while the doctors/physicists run the numbers through the computer and write the radiation plan, then radiation can begin. LLUMC, however, is a much larger facility and indicate that they can usually get out a plan and start radiation within a 3-week window. Of course, the plan can't run if I don't have the CT Scan/mask made. Crazily enough, they usually scheduled the consultation and planning appointments back-to-back over a two-day period. There were absolutely no openings for a morning planning appointment on Wednesday, though. Mary Ellen (who will be my case manager in California) made a couple of phone calls and found a local patient who could take an afternoon opening so that I could take an 8:30 a.m. and just maybe make it back to LAX for our flight to Honolulu. (I haven't heard how long that appointment takes, but I've done this same thing in Goshen and it took a few hours). If we leave LLUMC at 11:00 a.m., we are looking at an hour or two in west-bound traffic since we're headed into LA on one of the busiest expressways in California. That puts us at the airport at 1:00 and our outbound flight is scheduled at 2:35 (can someone remind me to verify that time b before 2:00 a.m. the night before the flight). There's only one thing, one person, one veritable force of darkness that could stand in our way....... Anybody want to take a guess?

ANTHEM!!!!!!!!!!!

So, originally Anthem told us that my pre-determination was approved -- that I was approved to receive proton radiation, no matter what facility I go to. "It isn't the facility that is approved, it is the treatment," according to Stephaniem, head of Anthem pre-determination/UM Services (She is an enigma. No one has ever seen her, but evidently she holds the power). My case merits approval for this special radiation (duh... it's like the only option). I already have a pre-determination approval letter in my hand (in the color-coded, chronological OCD binder) It says proton radiation is approved but lists Dr. Thornton and MPRI in Bloomington as the treating physician/facilty. When we first learned that this change of venue could take place, we called pre-determination immediately back they said there should be "no problem" transferring facilities for treatment. Now that this transfer seems plausible, they are back-pedaling. Evidently LLUMC uses some different "codes" for their treatment than Bloomington uses. These codes are listed on the pre-determination form. If the codes change, then we would have to start the pre-determination paperwork all over again from scratch and we're back to the whole "we're behind on pre-determinations by 4-6 weeks response." So, Ru and I were set to walk out the door at 3:10 and head out to Indy. Instead, I had to compose a panic-stricked email to the all-powerful Doug Hasler (Elkhart Community Schools attorney) and update him on the fact that I may need him to go to bat for me again -- I'm pretty sure he worked on this for two days for me just a week ago. UGH!

Once again, LLUMC can see me in consultation on Tuesday, but they cannot really touch me on Wednesday unless they know they are going to get paid from someone. Mary Ellen was going to try to push this through quickly. Maybe, just maybe, since they've already established that proton radiation is medically necessary and all they've got to do is change some codes and print out a new form, they can expedite the thing and get the letter/verbal approval to Loma Linda tomorrow. This time I was one-step ahead of them, though. I asked up-front about the option of paying for this planning appiontment myself and waiting for reimbursement from Anthem when it is approved (there is not really a question that it will be approved; it's simply a matter of how long before the approval is in our hands). Well, Mary Ellen says that "may be possible", but they bundle the consultation appointment and the planning appointment and bill them together, so I would have to be prepared to pay for both up-front or work out something with financial services and it would be "a lot of money."

Does anyone out there have any idea of how to quantify "a lot" from the standpoint of a medical provider? I have a Visa Platinum, but I'm pretty sure if they gave it to me, they're giving them to everyone these days and the platinum thing is no longer really signifies that I'm some precious metal and worth a exorbitantly high credit limit. I don't know what they should have really called my Visa. Perhaps they could have named it "Just enough to buy a really nice king-size mattress" Plus, Visa platinum has been busy booking flights and hotels and paying for doctor's co-pays.

I write all this to tell you I guess there is a slight chance that my next post could read "Help! I need to raise $15, 345 by 8:30 a.m. tomorrow!" (At least that gives us until noon in Indiana and the bank will be open....good thing we already got that charitable account set up and running :) Alright, if you are following along, I would sugggst you just get DSL and stay connected. I have no freaking clue what is going to happen tomorrow (I mean today).

Color Blind

2006-05-12T01:59:00.000-05:00

I hope most of the Crips in LA are color blind because well over half of my closet is red!

The only question that remains is "How long will I be living in California?" Okay... that's a total and complete lie. I also have to figure out how to finagle a way to get Anthem to cover my transportation and lodging, find a place to live, find a car to drive myself back and forth from home to treatment, figure out where my kid(s) are going to go while I'm gone, secure good directions from Loma Linda Medical Center to Rodeo Drive (I threw that one in for good measure), select and target the readers I'm most likely to convince to fly out to California for a visit, scan all of my medical records (nearly 100 pages) into the computer and burn them to a CD-Rom, and pack and be ready to leave for Hawaii by Sunday night.

Barring some major mishap, I will be starting proton radiation at Loma Linda Unversity Medical Center's Proton Treatment Center sometime in the first few weeks of June. The only downside to LL is that they rarely work collaboratively with other doctors. I accidentally included Dr. Wheeler's amazing dosimetry and radiation plan when I faxed them 32 pages of medical records, and I need everyone to pray that they will be so awed by the genius of his plan that they decide I can safely receive 5 weeks of protons in California followed by 3 weeks of photons (traditional radiation) in Goshen.

Did I mention the fact that when we booked our itinerary to Hawaii, I made a split-second decision to stay over in LA for an extra day in order to visit Jeremy Lugbill and Kristin Conn (soon to be Lugbill)? I was feeling guilty about not being able to attend their wedding since I would be stuck in Bloomington getting radiated. We were going to have a four hour layover at LAX anyway, so I just said, "Screw it, I've already missed like 3,485 days of school this year....what's one more day?" Well...It just so happens that Loma Linda needs to see me at least once to get the plan running, and the doctor has agreed to see me on Tuesday or Wednesday when we are already in LA. This means that my radiation plan will be running while we're relaxing on the beach in Oahu. I dare just one of you agnostic or atheistic or some other a-prefix reader to try to convince me that God himself did not choregraph this one!

We've already established that Rancho Cucamonga, CA is the perfect halfway spot between the hospital and Jeremy & Krissy's newlywed pad. Anybody have time to see if there any furnished sublets available? (2 BR...expecting visitors)

More Not-So-Great News

2006-05-11T01:32:00.000-05:00

Okay... I received my response from Dr. Thornton and MPRI and my hunch that they were proposing that I not begin radiation until August was correct. In fact, they are actually predicting that I would not begin radiation until the very end of August. In "Not-So-Great-News" I mentioned that I might post for all of you the letter that I wrote to MPRI concerning this delay of schedule. I am going to post it for all of you to read. It is lengthy, but I think it will help you to better understand why this delay is so unacceptable to me. You should probably know that I have attempted to temper my true anger and frustration within my correspondence to MPRI simply based on my notion that it is never a good idea for one to burn bridges that one may need to cross. Here goes:

Dr. Thornton, Kim, and the Staff of MPRI:

I apologize in advance for the length and intensity of this email. I know that you are all very busy, but feel that this communication merits your full consideration:

First and foremost, I understand that your facility works under very strict guidelines and perhaps there is nothing that can be done in this situation; however, I am not certain that you understand the full ramifications that this delay will have on me personally. I am going to outline why this delay is unacceptable to me based on how it will affect several aspects of my life. Before I do, though, I need to tell you my biggest concern is that I was mislead at my original appointment with you on Monday, April 24, 2006. My friend Nicki and I were both present in this appointment and took verbatim notes with each of you. At this appointment I was told verbally by Dr. Thornton "We will bring you back sometime next week for your planning appointment." and I was also directed to "contact Kim if I have not heard from MPRI within 3 days." Although I did not hear back from you directly within that time period, I sent you an email on Friday, April 28 and received your respective responses on May 1 and May 3 respectively. On May 3, Kim alerted me that the hold-up was my insurance company. This holdup was unacceptable to me, so I worked diligently on my end to problem-solve and my pre-determination paperwork was signed on Friday, May 5, 2006. It was my understanding at the time that insurance was our delay. I was not told that your facility was also behind.

I do not understand your quota system, but can document that there was no mention of it as a cause of a delay until I received Kim's email yesterday. In fact, at no time up until yesterday had I been told that there could be this long of a delay. Right now I am caught in limbo. Goshen Cancer Center is poised to correlate plans with you and even ready to start radiating me, but Dr. Thornton indicated that he cannot authorize my IMRT radiation until he looks at the plans side-by-side. Since his plan will not be ready until August, both Goshen and I have been immobilized. I am under no misconception that this month could be the difference between life and death. After all, I've lived with this cancer for 10 years now and it hasn't killed me. Yet, this is cancer. It is not lying dormant. Until we start treating it, it is progressing in some capacity. If I do not start radiation until August, essentially I will have sat around and let this cancer grown and multiply for nearly half a year. Ultimately, I feel as if you have stripped me of all my options. If you had been upfront with me about this from the beginning, I would have likely asked you for information about the traditional proton radiotherapy and requested a referral to Boston or Loma Linda. Either way, it is important to me that each of you understand the effects that this delay will have on me in several arenas of my life:

Physically:
1. Right now I cannot smile, chew on my right side, or taste much of anything. I'm having a hard time articulating my words (one of the hardest to say is my own last name) because my the right side of my lip does not move. I cannot blink my right eye, consequently it is becoming dry and fatigued which is affecting my vision (I've run over three curbs and nearly demolished one mailbox). I am starting to notice more effects on my equilibrium and balance. So, here I am wondering..... "What the heck am I going to be like by the time you actually get around to radiating me?"
2. Who the is in charge of me and my pain while I'm waiting in limbo? No one seems to want to administer my meds and my head feels like it is perpetually in a vice? When I hug someone and they press against my cheek, it is even painful.

Emotionally:
1. If you can't already tell, I am losing some steam here. It seems like my optimism and strength are being whittled away by intertia. That is scary to me because Dr. Thornton explicitly told me that attitude makes all the difference with this cancer. It just does not seem humane to tell a person "The best thing you can do for yourself and for this cancer is keep a positive attitude" and then turn around and give them news/information/obstacles that make it virtually impossible to follow "doctor's orders."
2. I have a foster daughter -- scratch that, TWO foster daughters -- who need me. They are already facing the possibility of having me gone for the summer. Some of their biggest needs are academic. Now I have to tell them that I am going to have to move away for 8 weeks during the school year when they needs me most. They will no longer be able to come stay with me or visit me because they will be in school. These are kids who have never had a support system. They finally get one and your quota is going to take it from them.
3. The majority of my friends and family are teachers. They are free in the summer. If I am living in Bloomington from June-August, they will come visit me. You have scheduled me so that, not only am I facing a very scary cancer diagnosis and treatment, but so that I will be forced to go it alone. I can't imagine that is the best-case scenario for my mental health.

Professionally/Financially:
1. Because I am a teacher, my calendar year essentially begins in August. Under the original schedule we had projected, I would have been able to return to teaching full-time next year. This cancer has already ruined the remainder of my 2006 school year. I am not teaching my students. I am missing the one unit where I know kids actually learn a real-life lesson. Now, I am facing the prospects of not starting off the 2006-2007 school year. Do you know the ramifications of that for a teacher? If I don't captivate these 125 freshmen students from the moment they step into the building, I will lose them for an entire semester or year. Someone else will be setting the expectations for my classroom. Someone else will be setting guidelines and policies and establishing the overall tone/feel of the class. Someone else will be establishing the initial relationships that ultimately determine whether a kid is "hooked" into the class or not. It is virtually impossible that this other person will be able to execute this the way that I want it executed. And, when I return I will be facing an uphill battle to get these kids back. For some kids, this will be the difference in passing ISTEP, getting a diploma, and making something of their lives.

2. I derive a great deal of my own personal identity, energy, enthusiasm, and vigor for life from my occupation. Dr. Thornton, I believe that you yourself said that maintaining my positive, fighting spirit is one of the best things I can do to battle ACC.
3. I am currently depleting my sick bank by teaching only 1/2 days. When this school year ends, I will break even in the sick bank. If I do not start radiation until August, I will be able to sign a regular teaching contract; however, I will be forced to borrow 40 days from the sick bank. At the end of my teaching career I am paid for each sick day as part of my retirement package. Your schedule will adversely affect my financial future.
4. If I had been scheduled in Bloomington according to our original agreement, I would have been able to take the one master's class I could not attend at IU Bloomington or IUPUI and stay on track to graduate with my MSW in the spring.This option does not exist in the fall as I am enrolled in 2 classes and am scheduled to complete an internship. This degree would have resulted in $8,000 annual pay increase . This delay in the schedule will costs me not only retirement benefits, one whole contract year without this pay raise.

I have many more concerns that I cannot outline due to time constraints. Ultimately, I know that MPRI is the best place for me to be. I have a great deal of confidence in you. I want this to work; however, I need to hear from you -- each of you -- regarding this. If we cannot find some way to make this work so that I can resolve my issues of my physical deterioration and return to teaching in the fall, I need you to give me other options. Can I go elsewhere? Is it safe? Is there any treatment I can be receiving now? Is there any way Goshen can safely start me? I guess this is my ultimate question: Is my treatment being delayed a matter of legality due to your IDE rules and regulations, or is it merely a scheduling/logistical nightmare? One is acceptable to me, the other is not.

Thank you in advance for your consideration,
Ashli

I have already received a response from Dr. Thornton. It was again vague and elicited more questions. I have already replied and hope to hear back from Dr. Thornton tomorrow. When push comes to shove this is their explanation: "Kim has a firm handle on the schedule, and she is informing me that we would not be able to start you with protons until August. This is entirely due to our commitments to previous, earlier patients." Of course, I pointed out to Dr. Thornton that if the delay is due to commitments to previous patients, then those previous patients must have existed at our original consulation of April 24th (had they not I would be the previous, earlier patient and my plan would be running right now), therefore the delay was predictable and had he informed me of it at the onset, I would have begun questioning this course of treatment three whole weeks ago and had time to make an informed decision that is my physical, mental, and emotional best interests.

But I can count on AA (that's what I'm going to start typing instead of Amazing Alysia) who spent hours on the phone on my behalf and spoke to Brooke in Loma Linda and, if I can expedite them my medical records and the doctors agreed to take my case (they are skeptical to take anyone labeled "stage 4"), they could begin planning in a week and I could begin radiation at Loma Linda sometime in June and be back to start school in August and then called Anthem to verify that I would not have to battle them again for pre-determination paperwork and learned that the treatment, not the facility is what needs the seal of approval so there is no delay. Furthermore, Loma Linda is considered in-network. All this to say I could potentially moving to California within the month.

How is that for a 24-hour update?