Still Nothing to Report

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

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

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

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

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

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.