Vegas, baby!

It’s just shy of six months ago that I was lying in bed in the ICU convinced that I would never walk again, convinced that I would never lift my head or turn my neck, convinced that my world would never stop spinning… and yesterday I crossed the finish line of a post-brain-tumor half marathon. With a little gumption and determination, I set a goal as preposterous as running another half marathon, all before I could even walk without a walker. The memories of being so sick are still so raw and burned in my mind. Although I miss the peace and quiet and stillness that tinnitus and vertigo don't allow, I cannot deny that life is good, and I'm spoiled by the kindness of the company I keep. One foot in front of the other, forward motion, whether you’re following a walker or chasing after a finish line… Hmm, what next?!

Less than 1%

I don't think anyone is checking this anymore but I had a great doctor's appointment last week and wanted to share. I had my four month baseline MRI and it was all good news. After another hour in the MRI machine and a great meeting with Dr. Harsh, we found out that .5% of the original tumor remains. Whoo hoo! The tumor is in two places: (1) there is some tumor plaque on the facial nerve, and (2) one of the forks of the tongue of tumor in my inner ear remains. Also, the fat dam is holding. I'll go back on my one year anniversary for an MRI, then again in two years, then three, then every five years for the rest of my life. Both pieces have a ten percent chance of growing again, and if so, it'll most likely be treated with radio-static-surgery. Otherwise, my other challenges (except for my hearing) *should* continue to improve with time. I have a clean bill of health! Amen.

Thanks to each of you for your help in getting me here. Lex, thanks for coming with me to the appointment...I was glad to have you there.

Now I can really say: BRAIN TUMOR - CHECK. DONE.

Seven Weeks and One Day

I ran today!!

Besides humbling, the road of recovery is waking up every morning and reintroducing your self to your body.
Self: Good morning body, how ya' feeling today?
Body: Okay, but my neck is real stiff from the incision and my left eye is numb.
Self: No worries, we’ll take it easy today.

But today it went something like this…
Self: Good morning body, how ya' feeling today?
Body: Alright. Tired from the tinnitus.
Self: Hmm, I have an idea. I think it's time we try running!

And so you have it - I ran this morning… and it was GREAT! Granted, I ran slower today than I did on the first mile I ever ran when it was California State Law for all fifth graders to complete the mile. But that’s no big whoop; I still tried! Not only did I feel drunk, I know I looked drunk because I zigzagged from side to side. But who cares because I did it - wow!

Okay, my body’s now telling my self that it’s time for a nap.

Seven Week Anniversary

I’ve retreated back to the mountains for some sunshine, rest and quiet! After three days in the noisy, foggy city for my sister’s baby shower, I am exhausted and feel like I have jetlag. It was wonderful to be home although old habits die hard; I simply tried to cram too much in. I was running on fumes and adrenalin, wishing for the energy I was privileged with before June 16th. Again the long road of recovery humbles me. I’ll just have to Carpe Diem in my own new post-op kind of way. Today is my seven-week anniversary (yes, I’m counting weeks now instead of days) and I can actually start to see the light at the end of the tunnel.

My face is still improving every day, which, to me, is nothing short of a miracle. I’m extremely optimistic that, in due time, the rest of it will recovery as well (my eye will close when I sleep, taste will come back, my left eye will tear when I cry… and if not, it’ll be my party trick).

I’m still learning to cope with being deaf on one side but have figured out that turning my good ear, like an old fashion ear trumpet, truly helps. The tinnitus is brutal because it never really stops ringing or swishing – but, again, I’m sure that’ll continue to heel as everything adjusts, and I’ll have peace and quiet again one day. I do have an appointment next week at Stanford to find out if I retained any hearing and what my options are in terms of a hearing aid. Fingers crossed!

The vertigo is its own beast - I feel like I’m drunk all of the time and trying to keep from falling over. When I get too tired, I have to use my arms to help guide me. Because I have already noticed improvements, I’m confident that this will continue to recover as the right side gets used to taking care of the left.

Luckily, unlike Cousin Eddie, my titanium plate doesn’t inhibit me from getting too close to the microwave. (Chevy Chase’s Christmas Vacation anyone?)

Rumor has it that the cost of surgery is going to be $250k +/-. Guess I don’t have a million dollar smile, but I'm happy with a quarter million dollar smile… even if it does veer to the right.

Thank you for supporting me and getting me to today. Seven weeks ago I would not have thought it possible, but you reminded me that it was. And here I am, ear trumpet and all!

I didn’t get shampoo in my eye today…!!!!

Thanks to modern technology and the iPhone, I was able to have a “virtual” appointment with my Stanford surgeon and his fellow while I was in the mountains… and they think they have a diagnosis for me explaining why I was having so many changes in my facial appearance and its function. They believe that I have an uncommon, underreported phenomenon called Delayed Facial Nerve Palsy – and that it is treatable. A miracle, if you ask me. While I was in the hospital, they thought I had aseptic meningitis but I tested negative for it. One of my surgeons co-authored a medical study on Delayed Facial Nerve Palsy. The report drew the conclusion that a pseudo aseptic meningitis diagnosis predisposes patients to this virus. After a long phone call with the doctors and using my iPhone to send about 15 pictures of my incision, ear and various facial functions (i.e. smiling, winking, raising my eyebrows), they were confident with their diagnosis and even went as far as to say, “Adri, we’re going to get you your smile back.” Music to my one, good ear.

With the help of five new medicines, my doctors set the expectation that most people get better within six weeks to 1 year, but I am already noticing improvements. Instead of waking up every morning with double vision and some new facial weakness issue – and the fear that comes with the unknown of getting worse, I am waking up better. I didn’t get shampoo in my eye when I showered this morning implying that my eye was able to stay closed. Again, a true miracle in my opinion.

Thank you for following the blog, and for your support and prayers that have helped me get back on the path of recovery. I can’t wait to see you when I’m back from the mountains, and hopefully show off my fixed smile!

(Side note: Don’t you think I should call Apple and tell them about how the iPhone helped me? “There’s an app for that.”)

Just when you thought it was over...

So I know I said we were closing the blog but unfortunately Adri has had some setbacks. Last Thursday she woke up in the morning and had double vision and some other nerve issues. She called Stanford and she was asked to come down to Stanford for a CT scan. It was a really long day and after her CT scan and meeting with Dr. Harsh, he confirmed that she is having some late on set nerve symptoms. The CT scan looked good and there was nothing glaring which was good news. The other tough news to swallow was that he is not sure of what is causing the symptoms but he is hoping they are temporary and hopefully things will self correct during her recovery. Everything right now is a wait and see. If we get to a year and she is having these same issues then they we re-evaluate and consider these nerve issues permanent. Waiting is the hard part, wait, wasn't that a previous blog entry? It is still true!

Adri is currently up in the mountains and slowly working on her recovery. Her balance is still a bit shaky but she is making progress. She waled 2.2 miles, slowly, but she did it. She will most likely sleep the rest of the day but she is so goal oriented that she is really trying to push herself within her bodies limits and the direction of the doctors. I felt like the coll older sister the other day because I let her drive within the subdivision in the mountains. She had a little bit of a rough time backing up and turning but it is all practice. She did pretty well but not sure she is ready for a long roadtrip.

Fresh Mountain Air = End of the Blog

Adri got clearance to head to the mountains for part of her recovery. The fresh air and relaxed atmosphere will be good for her continued improvement. She is heading to Graeagle with my parents tomorrow. This has become a family tradition over the last few years and we are so glad Adri is feeling up for the journey. She is nervous about the car ride but my parents have promised to take it easy and pull over for breaks when necessary.

This blog has really been an outlet for many of us to share our experiences with all of our family and friends. Adri has treasured the comments from all of you and has continued to be inspired by your love and support. We are not taking the blog down so feel free to keep commenting as we always look forward to your thoughts.

From here on out please contact Adri directly re: visiting. She will be in the mountains for awhile and will look forward to a busy visiting schedule when she returns.

Thank you for all of the flowers, gifts and cards. Unfortunately she won't receive anything you send to my parents house for some time. Please reach out to Adri if you do have something you want to send her way and she can tell you how to find her.

Please read below for some last thoughts from my mom.

Thank you all! This journey would have been so much more difficult without the support from our treasured family and friends!