Welcome to my journey with Neurofibromatosis type 2, known as NF2, a genetic mutation which causes numerous tumors to grow within my brain and spine. Since 2004, I have undergone radiosurgery and 3 brain surgeries for 7 brain tumors. Life with NF2 is definitely a test of faith and a challenge to keep positive. Join me on my harrowing adventure to keep active and live life to the fullest!
Tuesday, May 24, 2011
It was an AUSPICIOUS day! One week post my 3rd major brain surgery
Photos by Michelle De Grand
Dad waiting at the tram station
Right - Shantelle and Kaydin riding the tram during their visit to OHSU during my surgery
View of Mt Hood from the tram connecting the OHSU clinic offices on the riverfront to the hospital on the hill Sorry no time to post last night. I was exasperated and tapped out! It has been an emotionally draining few days yet I AM keeping up with my fitness! (I have walked daily outdoors on a route that includes hills and walked for one hour and a half at a pretty good pace this evening.)
Ok... the brief run down...
Monday May 16th sometime after 7:30 am at the Oregon Health and Science University Hospsital, I was wheeled away and put to sleep for a repeat crainectomy on the left side of my brain. A tumor mass which was operated on back in Oct 2009 grew back and an additional cyst appeared to be growing from the tumor toward my brainstem. Not good! I recieved this news at my last checkup at the National Institutes of Health the first week of March. We coordinate my care between the NIH in Bethesda, Maryland and OHSU in Portland, OR. My doctors on either end of the country are actually colleagues so it works out nicely. Portland is about 3.5 hours from my home in WA and 40 min east from my parent's home in Oregon.
Back to the story...
As always, there seems to be more tumor once I am opened up than there appears on the scan. Some patients tend to have lobulated tumors or tumors in clusters and I happen to be one of those. I have not seen the report yet but the surgery was documented and filmed. My family informed me there was a heck of alot of tumor. The tumor mass was meshed with my vestibular and facial nerves making it tricky to get at. The surgery was 5 hours and I had the kindest post surgery wakeup in recovery that I have ever experienced. It is foggy but I have a vague memory of groggily waking up and wondering if they did the surgery yet. In my sister's blog post, that must have been the time she reported I had no pain. Apparently it must take a few minutes to kick in! ;-)
From each time I have been in the recovery, I remember fading in and out. For my first 2 surgeries my husband and our friend KC were there to greet me which I was SO RELIEVED to see as both were challenging experiencees, the first utterly terrifying which left me uncertain if I would pull through. This time though was so gentle and peaceful. My wondeful friend Shantelle, who also has NF2, and her son Kaydin were the first warm smiles that came into focus. Immediately comfort overcame me as if greeting a dear old friend at the pearly gates. Shantelle, who also comes from a family with several members with NF2 including her younger son, was there with my family to offer support and visit during the surgery. Thank you Shantelle! My family and I greatly appreaciated you and Kaydin being there (by the way, Shantelle came all the way down from WA state where she lives nearby in the Seattle area).
Unfortunately the bad part of coming out of surgery earlier in the day is that I have to spend LONGER in ICU which I TOTALLY dislike. Every hour I watch the darn clock patiently watching the painstakenly tick by until I can be moved to a regular room. What that means is that there is lots of pain in ICU and often you are pretty nauseous, throwing up, dizzy, ears ringing, and may be suffering headaches. Your neck is way to painful to turn your head or body either way so you end up flat on your back with just the view of the clock and the nurses station window.
I am not entirely certain what time it was when the surgery finished but I do recall seeing it turn 5 pm and agonizing over having to wait ALL night before I can get out. Although I only threw up once in ICU (water), I had lots of pain on both sides of my body making it extrememly uncomfortable. From the surgery positioning, my muscular thigh had been pressing into whatever chair setup immovable for 5 hours. As a result, the outer thigh muscle in my leg developed and painful hematoma and tightened into a HUGE painful knot. Further, the nerves of the skin of my right leg were left with a burning pain sensation as if being slapped repeatedly over a long duration of time. On the left of course was inflamed incision wrapping into a C shape above my ear and extending down to around my neck. It is so painful at first that I cannot turn my head for many hours afterward. Normally, you would try to turn your entire body but my right side was in so much pain that I was stuck flat on my back.
Thank heaven when the next morning came. However, there were not any rooms available for me!!!! So I had to stay longer in ICU.....that means more lying on my back being uncomfortable. Fortunately by late morning an occupational therapist showed up who helped me into a chair which felt so good! With another therapist we had me stand up and walk a few steps but I was still kind of dizzy and nauseated upon rising. So with the cathetar attached, I took a few steps from the chair toward the therapist and a few steps back.
Shortly after lunch, a regular room openned up for me, with a great view too! This time around to try to alleviate my violent reaction to anesthesia, they applied a sea sickness patch behind my right ear. And it worked!!!! Naturally with this type of surgery you do still get sick which is pretty much unavoidable but it was so much better! Think of the hurling pizza after doing 20 rides on the Zipper compared to slight motion sickness on a ferris wheel. As such, after reaching the phases to suck on ice chips, I managed to consume 2 cups of orange sorbet throughout my ICU stay and was able to eat lunch when moved to another room. As a matter of fact I ate ALL meals and held them ALL down following! It has been the best recovery I have experienced after chemo, radiosurgery and 3 brain surgeries - definitely the mark of an "AUSPICOUS" day!
I will continue to share with you my progress. Thank you so much for your prayers, words of encouragement, emails, cards, flowers which I am REALLY ENJOYING, well wishes, good vibes, get well treats, messages, visits, and support! My life is blessed by you all!
P.S. - Although ICU is an impatient waiting game for me, all the nurses and staff are MARVELOUS! My ICU nurse even gave me a sponge bath and one of the nurses was a climber too (the Oregon peaks - she noticed my Keep Climbing bracelet Sean Swarner gave me that that staff let me wear throughout the surgery. Pretty cool, eh? as technically you can't wear any jewelry)! I love the OHSU hospital even though I like to get out as fast as I can. In the coming days you will see some pics. Its an awesome place with a brilliant location! Truthfully it is sort of sad when I leave. The ambience there is so peaceful, staff friendly and helpful, clean, great food and views, and the mountains always like to appear to give me a send off! It is tradition!