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 :))