Please Vote!

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

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

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

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

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

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

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.