A Difficult Quandry

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

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

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

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

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

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

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. . .

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

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