Four months ago yesterday, my wife ("C") was discharged from our local hospital after being newly diagnosed with Wegener’s Granulomatosis. C’s rheumatologist, Dr. Maria E. Darland, told her that she would be able to "re-enter the world" in approximately six to eight months after treating her condition over that period with prednisone and cyclophosphamide. Unfortunately, after about a month and a half, C’s liver panels showed the onset of liver damage and she was taken off of cyclophosphamide in order to try to prevent any major, permanent damage; this was bad news because up to this point, her condition was responding well to the combination of the two drugs.

Weeks passed as C’s liver recovered and her liver panels improved. We were growing increasingly anxious because we knew that C could not continue to take the high dosage of prednisone she was prescribed without suffering further complications. During a follow up at the end of October, Dr. Darland came to C with news of a new yet-to-be-FDA-approved treatment for her condition: Rituxan. Dr. Darland learned of the use of Rituxan for the treatment of WG at a conference that she had recently attended. After reading the drug information that Dr. Darland provided us and weighing the risks and benefits, we opted to pursue the treatment. However, before treatment could begin, my health insurance needed to authorize it; if they would not, we would need to petition the drug manufacturer to see if C could get the drug gratis (or at least at a reduced rate – apparently, this medication is expensive).

The insurance company denied the initial request. Dr. Darland suggested that we write a letter of appeal, citing case studies and explaining the change in C’s quality of life since she had been diagnosed with WG; Dr. Darland’s office would also appeal to the insurance company on our behalf. C sketched out a letter and I applied quite a bit of polish to it. Dr. Darland then provided some edits for the letter at another follow up appointment. We never had to send that letter.

That same day, I was home early from work. I went to the mailbox and found a letter from the insurance company that had its envelope hand-addressed to C. I called her cell phone, left a voice mail, and sent her a text message to call me as soon as she was able. C returned my call (she had been getting blood drawn for more lab work at the time) and I told her about the letter. I opened the letter and read it to her: the treatment had been approved! I gave C the pertinent information and she went back to Dr. Darland’s office with the good news. C made a new appointment to start treatment on December 1, but she received a call a day or two after making that appointment telling her than a cancellation had occurred and that she could start treatment a week earlier; she jumped at this chance, of course.

The Tuesday of Thanksgiving Week, C had her first treatment with Rituxan. I stayed at Dr. Darland’s office with my wife for a few hours while the nurses got her set up with the IV and helped make her comfortable. Other than a few hot flashes (which were expected with this medication) and the terrible time the nurses had in finding a good vein to insert the IV needle, everything went pretty smoothly. The following treatment sessions also went off without a hitch.

Following C’s final treatment session, Dr. Darland advised her that she could now go out without the medical mask but that she should take care to avoid large crowds and sick people while her immune system rebuilds itself. C will most likely have to undergo another round of treatment in about six months, but in the meantime she is free to return to work and live a relatively normal life again! This would not have been possible without Dr. Darland persuading the insurance company to allow her to treat C’s WG with Rituxan.

We are very thankful for Dr. Darland and all that she has done to help C’s fight against WG. Now, I just hope that the FDA sees the results of the clinical trials for Rituxan’s efficacy as a treatment for WG and approves it so that others suffering with WG who are not responding well to the standard treatments can have a chance to return to something close to a normal life. In fact, I hope that the FDA approves Rituxan as a standard option for treating WG.

[Added 30 DEC 2009]
It has now been two weeks since C’s final Rituxan treatment and Dr. Darland says that her immune system has returned to normal levels. Dr. Darland has also changed C’s level of prednisone intake down to 15mg (from her maximum of 60mg). We’ve been out to dinner or just to walk around Olde Town Fredericksburg a few times and it’s been wonderful! C’s working on increasing her stamina by taking up more of the chores that she used to do around the house and is improving daily. Soon, I hope to be able to take a little weekend trip somewhere for a big change of scenery.

This movie takes a look at the "drama behind the drama" of stage theatre and how a backstabbing (as well as delusional and lying) unknown can rise to the top. Not exactly a good moral, but a good and well acted story.

[Some day, I'll try to learn how to write a (more) proper movie review. Until such a time, this will have to suffice.]

Some examples:

• I should be working on my eighth "regular" blog post, but instead I’m stuck at two; I am not counting List updates for these
• I should have posted at least seven photographs by now, but have yet to post a single one.

I should also be working on some of the long-term items like the 5000 Question Survey and planning the home-improvement projects. I need to start my food log and exercising, but again I am not motivated. I have yet to "unplug" for a day.

I need to put my nose to the grindstone and start focusing on my List again. I suppose that will end up waiting until after the holidays, though – at least the "outdoorsy" items anyway.

I’m not really beating up myself, but I am disappointed in how I have been unable to focus. Also, I have two updates for the list that I haven’t written yet. Oh well. I’ll get to those updates soon enough!

I’m on the downhill half of the list now! 49 to go!

• At the Mountains of Madness – H.P. Lovecraft (queued up to read)
• Around the World in Eighty Days – Jules Verne
• A Clockwork Orange – Anthony Burgess
• Dracula – Bram Stoker
• I, Robot – Isaac Asimov
• Lord of the Flies – William Golding
• Les Misérables – Victor Hugo (reading now)
• The Picture of Dorian Gray – Oscar Wilde
• Rashomon – Akutagawa Ryunosuke
• Slaughterhouse-five – Kurt Vonnegut, Jr.

• At the Mountains of Madness – H.P. Lovecraft (queued up to read)
• Around the World in Eighty Days – Jules Verne
• A Clockwork Orange – Anthony Burgess
• Dracula – Bram Stoker
• The Grapes of Wrath – John Steinbeck
• The Hunchback of Notre Dame – Victor Hugo
• I, Robot – Isaac Asimov
• Lord of the Flies – William Golding
• Les Misérables – Victor Hugo (reading now)
• The Picture of Dorian Gray – Oscar Wilde
• Rashomon – Akutagawa Ryunosuke
• Slaughterhouse-five – Kurt Vonnegut, Jr.
• War and Peace – Leo Tolstoy

For reference, I have already read the following books from the list:

• 2001: A Space Odyssey – Arthur C. Clarke
• The Awakening – Kate Chopin
• The Catcher in the Rye – J.D. Salinger
• A Christmas Carol – Charles Dickens
• Crime and Punishment – Fyodor Dostoevsky
• The Fall of the House of Usher – Edgar Allan Poe
• Frankenstein – Mary Wollstonecraft Shelley
• The Great Gatsby – F. Scott Fitzgerald
• The Hitchhiker’s Guide to the Galaxy – Douglas Adams
• The Hobbit – J.R.R. Tolkien
• The Hound of the Baskervilles – Sir Arthur Conan Doyle
• Interview With the Vampire – Anne Rice
• The Invisible Man – H.G. Wells
• The Lord of the Rings – J.R.R. Tolkien
• Nineteen Eighty-Four – George Orwell
• The Old Man and the Sea – Ernest Hemingway
• One Flew Over the Cuckoo’s Nest – Ken Kesey
• The Pit and the Pendulum – Edgar Allan Poe
• The Scarlet Letter – Nathaniel Hawthorne
• The Things They Carried – Tim O’Brien
• The Time Machine – H.G. Wells
• To Kill a Mockingbird – Harper Lee
• The War of the Worlds – H.G. Wells
• Watchmen – Alan Moore & David Gibbons

Today, I attempted to exercise my Constitutionally-granted right to vote in my local and state elections. Unfortunately for me, you are full of epic amounts of FAIL and IDIOCY. Surely, even you must understand that if you make available the option to update voter registrations when your customers renew or replace their motor vehicle licenses, that you should provide the necessary information to the State Board of Elections. This is not a difficult task, yet somehow you managed to fail. You not only failed to submit my information, but also my wife’s and, according to the gentleman running my local voting location, several other citizens. I suppose that this is what I get for assuming that you could do something again that you have not failed before, in my experience. I did not realize that I was dealing with a child who needs to be followed behind to ensure that you do your job!

I considered lodging a formal complaint, but I believe that there must be a sizable black hole at your disposal in which you cast voter registrations information. I have to infer that complaints end up in that very same black hole, so this mini-rant will need to suffice.

Good day.

Yours in emnity,
Bill Hedge, disgruntled citizen.