Tuesday, May 31, 2011

Out And About Wed May 18th

Images taken from Rebecca's camera 2 days after surgery when she was able to wander outside to the outdoor garden and wellness center 2 floors below

Monday, May 30, 2011

The view from the room

Day 2 after surgery and I am up!

These are a couple photos taken shortly after I was able to get dressed Wednesday morning after the nurse took out my catheter. As soon as that thing is out, I take that awful gown off, happily put on a pair of underwear, and get into some of my cozy PJs! :D

The top photo is a gorgeous flower arrangment that was delivered from my husband's business coach at Kinder Reese. We never have met but they did a fabulous job picking out flowers and colors I LOVE! Thank you so much! I was so surprised!

In the photo below, my NF2 friend in London and his wife Maddy sent me this sweet personalize get well card. Thank you for your cheer all the way on the other side of the globe!

What is sticking out of my neck? GROAN Needles and I are not friends. It is like my veins have intelligence and at any visual cue my brain recieves of a needle or knowledge of one coming, they gol into serious hiding. There is an exact science to finding a usable vein on me and even if everything is followed to a T, there is still no guarantee we are going to get one to agree with us. Normally the requirement is heating pads on the veins to bring them out, sometimes I need to pump my arm, the tiniest of neeedles we can get away with must be used (often the butterfly), and the best luck is in the top of my hands as the veins in my arms tend to roll.

So anyhow, in ICU it turned into a big ordeal and my bruises in my battered arms and remnants of several needle pokes are finally starting to fade. For I do not know how long, several nurses came and an ultrasound machine was used to try to find my veins!!! That was a first. They had difficulty at my last surgery too so what they did was give me a direct IV in my neck. I am not sure why but the nurses were not trained to do that and if I understood correctly, I had to wait for a paramedic to arrive and place an IV in an artery in my neck. So that is what that tube is doing hanging down from my hair on my right.

Fresh Out of ICU

Here is how I look coming out of ICU before I am able to put on my own clothes The gown is the traditional ass flashing kind. When they had me put in on in prep it was HUGE and I had to wrap it around me in order not to go streaking through the hall to quick go to the bathroom before they hooked me up to the IV pole;

For the first time, they had me wear this ridiculous "skull cap" they referred to it as which would never stay on my head and annoying just kept hanging around my neck like a noose. Unlike the other 2 surgeries, they had some gauze padding on the incision. So I believe this so called "skull cap" was supposed to keep the gauze in place on the wound. For the first 24 hours I was lying flat on my back with only the pillow area of the bed elevated at least at a 30 degree angle because it is important to keep the head above the heart after a brain surgery. So although the cap kept falling off, the padding was not going anywhere. Mom and I pulled it up onto my head as best we could to take a picture.

The photo of my legs on the left is a picture of the compression socks they have me wear after the surgery. Due to the amount of time someone has to be lying in bed, there is concern of developing blood clots in the legs. I for one happen to suffer from charlie horse cramps in my calves on occassion and need to regulate my potassium intake and sometimes take supplements when running high mileage when training for half marathons. Plus I am a really active person so lying for such a long time is difficult. The compression socks basically act as if someone is massaging your calves by squeezing and releasing them. They are powered by the electricity connected to the bed just like plugging in a heating blanket. Therefore, after the catheter is out, I need to have someone take them on and off me each time I need to go to the bathroom. Mom or my sister always to this for me.

Oh......the other things-

The gloves are just the manicure kind that I wear at first for 2 reasons.

1) I have something called Raynard's Syndrome where if my hands get too cold they loose blood circulation. Oddly for the first time I DID have an attack while in ICU. I think I had to lie on my hands to get the cirulation back. So that must be why I am wearing them. I think an attack was triggered shortly before I was moved to my regular room. Being that it can be cold in medical facilities sometimes, the gloves are an essential that I packed in my surgery bag just like my eye drops I MUST have with me.

2) I have a dry skin problem on my hands. These gloves are actually designed to wear at night after you apply lotion to keep in the moisture and make your skin soft. Surgery day I was not allowed to wear any lotion but I could afterward. So that is another reason why I am wearing them.

What's with the pirate patch? Am I making a halloween joke?

No. Actuially this is another essential. It is very common after brain surgery to have double vision. I did not know that for my first surgery and so I tried to improvise by wearing an eye mask for sleeping over one of my eyes so I could read and see.

My "Keep Climbing" bracelet given to me by one of my heros, fellow Hodgkin's Lymphoma survivor and Everest mountain climber Sean Swarner is gracing my right wrist (the hand that I am waving). In surgery prep the staff was so nice and allowed me to keep it in for my surgery which meant a great deal to me. hehe I sort of planned that and was hoping they would let me keep it on. :)

Sunday, May 29, 2011

My Lovely Ladies Thought of EVERYTHING!

Top Photo - Mom at Dad's birthday dinner May 26th

Middle Photo - Merrie at the hospital balcony on the 9th floor (my room was on the 10th)

Bottom Photo - My sister Michelle outside before Merrie's visit May 18th

I want to take a moment to acknowledge the incredible contributions to my care that my mother, sister, and friend and trainer Merrie Vieco have made to make this surgery experience more comfortable for me. Yes, sorry if I will be bragging a little bit. I confess they have totally pampered and spoiled me but my pupose in telling you is not to gloat. Firstly, I want them to know how much I really do appreciate them and secondly I think it is important to tell you so that family and friends of other patients get an idea of the sort of things they can do to feel helpful.

Let's start off with Easter. That was leading up to my surgery by only a few weeks. As a family we eelebrate that holiday and fully partake in traditional festivities. So there is the egg decorating, hunting, and of course the easter baskets. I asked to not have candy in mine this year so my mother and sister included goodies that I could use and some of them applied to the upcoming surgery experience and my planned longer stay in Oregon for recovery at my parent's home.

Off the bat, one of the first goodies in the Easter basket from my sister was a gorgeous seaside puzzle of a painting by Christian Lassen (the Hawaii surfer artist) that I would never find the time at home to piece together but would be a perfect brain mapping and repair project to work on in the weeks of my recovery at home. Get this......I even have my own special glass puzzle table in my mom's craft room that she found at Good Will during my visit to attend the pre-op appt at the end of April. So while my mom works at her desk making cards, I can be working on my puzzle in the same room with her.

Another goodie sis had in my basket was an inspirational bookmark telling me to "Believe". Aside from just believing I was going to live and get througth the surgery, I have had some discouraging complications which really require hope and a positive attitude to persevere. At my celebration of life party, both mom and sis gave me some books so I definitely found use for the bookmark to go with them.

In the Easter basket from mom I got a nice brush which I left down here for my return which is working great for coming through my wet hair with ease and not hurting the incision area. The stick of deoderant was nice too and I actually needed some as the stick I brought ran out. More hair bands to keep my hair out of my eyes which can cause me to get vertigo have been nice too.

My family unexpectedly showered me with gifts when we celebrated my life the day before surgery. I have VERY dry skin and taking the medicine can dry it out too. Mom brought me some special miracle skin cream that I lotioned up with well the day before surgery and afterward as the day of surgery you can wear NOTHING - no lotion, perfume, or even deoderant.

I also have trouble with dry mouth and dry lips. Mom bought me a special bottle of dry mouth flouride rinse which I have used daily. I was pretty lucky this time but the first time I vomited continuously and was not able to brush my teeth immediately. So we wanted to be sure we could remedy that problem should it happen again. Mom also got me a little travel size ziplock pouch of trial size toiltries and sis also got me a ziplock pouch of special burt's bees trial size products with special lip balm and dry skin cream.

Passing the time and relaxing your inner psyche......
It is common with brain surgery to have vision problems. Therefore, I do not do any watching tv much and I am limited on the amount of reading I can do. While in the hospital either my patience can only tolerate reading short phrases or I can only look at pictures because of double vision and difficulty reading letters in words. Mom gave me a book of whitty quotes and a picture relaxation gift book of puppy photos while sis gave me a beautiful nature photography book of the state of Washington.

In the hospital, I had brought with me a huge Planet Ocean photography book my sister gave me one Christmas and a thick coffee table book of National Geographic's best photography that Merrie and Pedro actually gave me for Christmas. So I was well stocked!!! Part of my recovery is that I need to sleep better. So my instructions are not to read any really heavy thinking material before bed. I alternate looking at all these books! They are a perfect way for me to unwind and just empty my mind of thoughts and just let my visual system take ovcr focusing on beauty and wonder.

By the way, the dog book was great to browse through when I got to take my first bath! Sis is just too good to me! A few days after I was home she mailed me a package of goodies from Bath and Body Works of the new scent, Country Chic, that I was complimenting her on when she was wearing the perfume at the beach house. So just when it is about time that I can take a bath and use my own soap, I get a bottle of bubble bath in the new scent with perfume and lotion to match in the mail! Too sweet, eh?!

Cheering up
At my party the day before, mom and sis gave me flowers and balloons to later bring to my hospital room once out of ICU. Michelle and DJ also had a flower arrangement of sunny roses and daisy's delivered to the room. And mom being the card making diva expert, has made me a collection of beautiful cards that I have adorning the windowsills. She gives me a card everyday. I will be sure to share some pictures of her lovely creations.

Little bit of info on Merrie.........
She is my trainer at Gold's gym who has gone WAY above and beyond running a half marathon with me and even traveling all the way to Africa to accompany me on a climb of the mountain Kilimanjaro. Although I began training before my first surgery, the training was really intended to give me an extra edge with my performance as a charity athlete and to help with overcoming my balance challenges. We had NO IDEA I was going to be having surgery again so soon and how beneficial this training would be at making me as strong as I could be to tolerate surgery, persevere, shorten recovery, make my recovery easier, and be able to bounce back quickly.

At my last training session the week we left for Oregon, Merrie gave me a gift certificate for a massage with Yoko at the gym spa who is AMAZING! What an incredibly great idea to get a relaxing massage before surgery that I never thought of! I have never done that before and if ever again, I will DEFINITELY do so! It was perfect and in fact, I think I could use one again when I get back.

Merrie and I work a lot on balance, core, leg strength, and upper body strength. We have been training together for a year and I am incredibly amazed at how strong I have been for this surgery, that I did not become weakened at all, and how soon I have been up walking and for long periods of time ON HILLS daily so soon after a major brain surgery. It is astounding! I am wearing my parents out because they do not want me walking alone and thus either need to go with me. hehe

Wednesday (only 2 days after surgery), I was up out of my bed wandering around the hospital disappearing from my room for lengths at time in the afternoon. As soon as I could, I wanted to go to the garden area outside on the 8th floor. I was hanging out with sis and mom when Harley went missing for a long time telling nobody where he went. After coming inside, I talked my sister into sitting in the lounge area next to the big glass picture windows looking out at Mt. Hood and looking through my books.

While I was sitting there, Harley appeared with my surprise! It was Merrie!!! She took the train down to come visit me and Harley went to the station to pick her up. What a fantastic treat! :) And of course she also brought me goodies! The first prize she pulled out of her bag was a nice soft pillow doll, OX, suitably with an expression of going through a hard time too. LOL It is hard to explain and you will understand when I show you a picture. Anyway, it is awesome I sleep with it every night! One night at home my mom peeped her head into my room through a doorway I was not expecting to see someone late at night which scared me half to death! I screamed in bloody terror as I clutched my pillow doll to protect me. It was pretty funny!

Merrie and I LOVE chocolate! So she got me 2 bars of specialty chocolate, fig and fennel dark chocolate and dark chocolate with butter toffee. Back at the room, I immediately broke into it and popped a square in my mouth. :D Merrie finds such unique things. She also gave me a box of homeopathic candy losenges for repair and healing which are great to take for my leg that has suffered a painful hematoma with neuralgia of the skin and brain health supplements to get my focus and cognitive function back on track. Finally, the last treat was a green tea healing garden set in matching scent of shower gel, lotion and body spray which was WONDERFUL after not being able to wear any scents for a couple days. Since being discharged, I have been greatly enjoyng showers with the fresh scent of the shower gel and smelling good with the body spray!

My beautiful ladies are so fabulous! Oh yeah, in addition to showering me with gifts mom and sis are always taking turns at the hospital so someone is with me. They have done this for 3 surgeries now THROUGHOUT THE NIGHT. In addition, they have given me massages, rubbed my head, combed my hair, washed my hair, painted my nails and mom has cooked, cleaned, washed my laundry, taken me shopping, and brought me to appts.

For my last surgery, my mother-in-law Cheryl is another lovely lady who flew out from Minnesota to stay with us for my first couple weeks of recovery helping me with my medicine schedule, helping us with my first days of being home, making sure my dogs were fed and Harley had what he needed each day, driving me around everywhere and going for walks. In addition to my mom and Harley, she has also accompanied me on one of my NIH visits assisting me with getting around and coordinating travel.

Thank you so much ladies for being a crucially important part of my life and helping me get through these battles with NF2!

Lastly, I will leave you with one of my favorite quotes inscribed on a plaque my sister gave me in the hospital with a picture of a forest resembling one of my favorite hiking trails in the area.

"What lies behind us and what lies before us, are small matters compared to what lies within us." - Ralph Waldo Emerson

Friday, May 27, 2011

The day of reckoning arrives

Photos taken with Rebecca's camera

Just catching you up here as I was unable to post leading up to the surgery. The photos of Harley and I and my dad and sister are in the OHSU admittance waiting room where my family waited me to go through the check in process of getting my plastic hospital bracelet with my name and signing off on the final forms. AND confirming that I have an advance directive on file. What the advance directive is is the patient's legal documentation of what he/she would like to have happen should the procedure renders one unconscious. Yeah so it is the real deal of facing your mortality and the possibility of not coming back or at least not in a state where you will be normal again and death is inevitable. My advance directive states I do not want to be put on life support should I reach a vegetative state which medical authorities deem irreversible with no chance of recovery. I think the only thing I have agreed to is to be administered pain medication so I can die comfortably.

Pretty heavy stuff, eh? I had to take time reading through it all and filling it out at my first surgery in 2007. It is kind of emotional being hit with having to contemplate something like that. So back then my family went down to the cafe for breakfast giving me time alone to read through it all and sort it out. Nothing has changed so for the last 2 surgeries I had to do nothing but just let office administrator know that I already have one on file and nothing needed to be changed.

Harley has first power of authority in the decision making should I become incapacitated and then my dad is second alternate in command. Both are logical and I trust to be able to seperate from being too emotional to carry out my wishes.

These pictures were snapped as my family and I parted ways for me to be taken down to surgery prep where I get undressed and into the hospital gown and several medical staff visit to ask my name and for me to explain what procedure I am having done and where. The reason is so that everyone is on the same page and there are no mistakes. Unbelievably true story at a hospital in the midwest, a brain surgery was performed on the WRONG side of someone's head! Imagine waking up in horrible pain only for them to tell you "Oh yeah sorry! We are going to have to do that again!"

I was really surprised they were taking me away so soon after I got there as with the previous 2 surgeries I had to wait until the afternoon. The good thing about that is that you do not have to suffer through hunger or thirst long or dry mouth. Before a surgery you cannot eat or drink anything after midnight. The only exception is a little water to wash down any medicine that you regularly take.

It is shortly after 7 am here so literally I was too tired to even think of being hungry and kept yawning through the check in process. I had last had something to eat about 8 pm, a light meal is suggested. And might I add to choose a neutral one and not something spicy that is going to burn coming back up afterward or give you heartburn up until surgery. After 3 experiences I got it down and stick to chicken with mashed potatoes and a sald. It was not a big meal and worked perfectly because it was pretty much digested by the time the surgery was over. So during the phase I was nauseous I did not have anything in me to throw up this time.

Last little tidbit.....you will not spend long in your clothes and they will be the clothes they give back to you when for your discharge. So they tell you to wear something comfortable. I have a zipper hoodies that easy easy to take on and off in case of cooler or warmer weather between the 2 dates It might be cool going in early in the morning and then warm out if your checkout is in the afternoon. I had a t-shirt in my bag and that was the case. The Kuhl band hoodie from REI was a gift to me from my sister and brother given to me 2 days before my first surgery in 2007. It is a favorite in my wardrobe and a good way to start out surgery day. Harley is wearing a matching fleece by Kuhl that I bought him the Christmas following my first surgery.

My parts are my comfy REI brand fleece (I have 2 pair, black and gray. The grey my sister also got me with the hoodie) and my shoes are an easy slip on pair of Keens which are easy to don after surgery. You will not be able to bend over to tie your shoes and either must cross your leg on your knee or just make it easy on yourself by wearing slip-ons.

And that explains the moments before surgery! Aftter the anethesiologist visit, I was wheeled away and then what seems like seconds passing by, I was waking up in recovery to the glow of white walls.

Reflective Moments

Photos by Rebecca Dufek

Well I'll tell you, I don't think a whole lot needs to be said in this post. The pictures themselves explain everything and you can understand why going to the beach, this particular beach, is a necessary presurgery tradition for us.

We are so glad we were able to take our dogs with us this time and it was SO NEEDED for them as much as it was for us! (THANK YOU Dave and Christie Hammond for so graciously opening your get away home to us again and again!!!) This escapade of taking them to the coast and then to my parents I think has been a vacation of a lifetime for them. Truly they are having a ball and this is the first time before surgery they were not really stressed out . I think they barely noticed anything happened to me. The morning of surgery it was just as if my family and I were just taking off somewhere routinely for the day albiet really DANG early! Then a few days later I came back as if I went on vacation somewhere and have walked them as usual everyday since!

It was amazing to watch them really cherish the sunset! I could not believe it! They were VERY into it and were reluctant to leave just like people. I have often watched Jake at our 2 homes either sit on a hillside looking out at the view or on the deck admiring the trees blowing up above. It is as if he is absorbing the beauty just as I would and he is deeply in thought. I have many times wondered what is going through his mind. But the sunset was really cool because it is very vibrant and in color. They seemed to pick up on this which I found engrossing.

The first 2 nights we were there by ourselves we enjoyed the most magnifcent Hawaii style sunsets. It was heavenly!

The pics turned out so great that it was a tough choice which ones to post. I will have to put together an album for you maybe this weekend now that I have them uploaded.

The glory of food!

Left photo taken by Rebecca Dufek

Right and Bottom photo taken by Jeanette De Grand

Ahh. I only have time for one short post this evening as I am WAY overdue for bed according to the new schedule. My hospital stay following the day of my surgery was actually only 3 days and get this....the only reason I was in a day longer was to give one more day to check my progress and to arrange a procedure I had to have which I will explain later (an outpatient surgery). Had I not stayed overnight Wednesday I would have beat my record for shortening my hospital time (I always have a goal of how many days before I get out).

With all my other surgeries I was incredbly ill actually projectile vomiting red jello on my husband's shoes after the first surgery in 2007 when that was all I could eat. I learned to incorporate and tolerate orange sherbet pretty well so that is typically the first food item I have or strawberry ice cream. This time was an incredible hotel vacation and I was able to eat EVERY meal as soon as they got me into a regular room and sitting up. I bounced back after the pain in ICU with amazing strength!
LOL In the picture here I am actually reading the menu and picking out a good assortment for lunch before I left the hospital last thursday. How funny eh! I never really got to enjoy the luxury of the food OHSU has to offer before and it rocks! When I told my friend in London I had french toast for my first breakfast, stunned he referred to my hospital as "swanky" which yeah I gotta confess it is pretty sweet and I am very fortunate!

I think an awesome veggie omlet is under the black cover here and I had cream of wheat on the second morning because with not being sick I did not want to get too carried away and keep my weight at least sort of in check. LOL The first day my sister ordered me a slice of cheesecake for lunch AND dinner! This is be the first time post surgery I will need to loose weight instead of gain it.

Check out the beautiful flowers my love and sister gave me on the window sill. The gerbera daisy plant with a matching pink gerbera daisy balloon my sister gave me at my celebration of life party the day before surgery. Then the day after surgery when I was moved out of ICU my sweet husband sent me the cute pretty in pink teapot with special Equadorian roses.

I was pretty spoiled and LOVED it! My entire window sill was lined with flowers cards - many beatufiul ones made by my mother, balloons, and even a fish bowl some visitors from New York brought me! Thank you so much for the warmth you all enveloped me with! I am still enjoying them in my parent's home!

Recovery is going very well for me and is actually like a REAL relaxing vacation which normally I have a very hard time doing. HAHA! You ask my husband and when we go on vacation it is actually more work! I like to pack in as much as possible and being a person of high physical activity, we are going to do something strenuous and sweat!
I am on restriction from doing that however and for now cannot be hiking, running, working out at the gym or operating at high stress. My mom has not too enthused that I am pushing the envelope this evening and wanted to get on the computer at 10 pm because I had not blogged yet. After dinner and celebrating my dad's birthday, I chose to watch TV for the first time to see the episode of "American Chopper" on "Deadliest Catch".

Seriously it has been very nice to have orders to settle down and just rest, take nice walks, relax, take naps, take a bath, read, and I am hoping to start on my puzzle tomorrow. So I am going to enjoy this moment while I have it. Night all! I will make a priority to do some posting tomorrow. :)

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!

Sunday, May 22, 2011

Celebrating Life

In addition to pursuing everything possible to get my head and attitude in the right place before surgery, my sister and I thought up making an event out of my last day with a "presurgery send off". Why be glum and approach your pre-surgeryday as a "last supper"? I have to confess to you I am greedy! I want to soak up as much life as available to me packed into months, days, hours, minutes, and seconds. Fretting about the surgery is not only an annoyance but also a frustrating hinderance cramping my lifestyle. So I let go to fully take in the moment.

Inspired by my optimistic outlook that I was going to pull thru and that the survival of such a major operation should be celebrated with the same enthusiasm as a birth, new job, new house, wedding, graduation, etc., so too should one's remarkable ability to endure and rise above a harrowing trauma. Upon concieving this idea, it became apparent to me that I most certainly have cause for celebration! I have survived 18 years beyond a cancer expiration date. Not only did I survive them, but I am very proud to have lived them fully with satisfaction. I am very pleased to feel I have lived a "dash". This is the balance with living with brain tumors and NF2. We cannot get down and discount my remission. Despite having problematic growing brain tumors (that are not cancer), we still need to honor and recognize reaching each remission anniversary for the beautiful life I have been blessed with.

Amazingly this signifcant date landed smack dab before my surgery! It all fell into place. My loving sister made a fun day of it starting off with a fun scavenger hunt game in the sand dunes and a delicious ice cream cake and goodies from my family for the surgery (snacks, special toiletries, nice smelling candle, cheerful plant and balloon, and books to pass the time).

In the afternoon we headed back to my parent's home in Scappoose to get in a light dinner, me a relaxing bath, and early to bed for all of us as 5 am was going to beckon before we knew it. (My surgery check in time was 6:30 am).

Vacation of the Mind

It has become tradition with each brain surgery to start out in a place of peace, solace, and serenity to prepare our mental thoughts and attitudes for the intensity that lie ahead. My favorite place to connect with my inner self is the beach...in particular visiting the Hammond Beach house in Pacific City, Oregon.

For my past 2 brain surgeries, we were not in a position that we could take the dogs along. As a result, they became REALLY stressed out exhibiting odd behaviors. So even the dogs needed to take a vacation of the mind before the big day. Fortunately since my last surgery, my parents relocated outside of Portland and we were able to bring the dogs along on this whole surgery adventure.

We left with the dogs on a Wednesday and spent 2 entire days on the beach with amazing weather and glorious sunsets before my family joined us for the weekend. Each day we got in a good beach walk/dune exploration and I went for long runs the last 2 days before the surgery to get in some last mileage before at least a 4 to 6 week activity restriction.

The photo you see here is from the day before the surgery when I went for a 58 minute coastal road run out of town and ran back along the beach and over the HUGE Cape Kiwanda dune I must climb on every visit. The dogs are dressed with their "survivor" bandanas we all wore for the scavengar hunt game my sister planned. Coincidentally, the anniversary of my 18th year of remission from cancer landed the day before my surgery so we decided to approach this whole experience in style with a small party.

Friday, May 20, 2011

Breaking Recovery Records

Hello All!

Quick note here to let you know I am out of the hospital already. Mt. Hood, Mt St. Helens, and Mt. Adams all showed up to give me a good send off on a glorious day! I hope to share a few photos with you if I can find the download cord to my camera today.

I have been doing so well this time because I was strong and in such great shape, that so far this has been the best recovery out of a treatment protocol for cancer 18 years ago, radiosurgery treatment for a large brain tumor in 2004, and then 3 brain surgeries dispersed between 2007 until now. I am breaking my own recovery records and actually could have gone home Wednesday but the doctors wanted to keep me overnight for one more day of observation as I have sustained significant imobility of my face. Aside from the new facial paralysis making things like eating, drinking, talking, and brushing my teeth a problem, the paralysis also prevented my left eye lid from fully closing. As a matter of fact, the half closure is the only movement I have on the left side of my face (keep in mind that the right side of my face is partially paralyzed). Therefore, using my face in any matter is exceptionally a challenge.

To protect my vision, the facial plastics team did an outpatient surgery on my eyelid in my room yesterday which is pretty much the main reason they kept me the extra day. To help the eyelid close they inserted a gold weight into the upper eyelid. My sister took some GREAT photos of the procedure so I hope she will be able to get them to me soon so I can post them for you. My eye sort of looks like a slight black eye on my upper lid but is actually purple in color and somewhat swelled. It is hard to see out of the eye and makes my vision kind of difficult. To not let it bother me and to read or see better, I sport a pirate eye patch. I told my husband that now his wife is a boxing pirate! hehe I sort of feel like I have a boxer's face after sustaining a few rounds.

I see that my family gavc people the hospital address and room number if people wanted to visit or send some cheer.

I am no longer there but still in Oregon. I am staying at my parent's home in Scappoose which is only a half hour from OHSU should I need to return if any complications develop. I also have appts scheduled with neurosurgery, facial rehabilitation, and will need to see facial plastics again to look at my eye. Hence I will be here for about 3 weeks.

For anyone wanting to get in touch with me, please email me at bluediverbeck AT yahoo DOT com. I can also access facebook from there and it is easy to get in touch with me as my facebook messages download to my email.

I am not out of the woods yet and this will be the challenge to not overdo it and end up getting sick. I feel I have pretty good energy and took a 45 min walk with my trainer Merrie yesterday afternoon with the dogs (we brought my babies so I could be with them. They became very stressed out the last 2 surgeries and this taking them with on a sort of vacation has made the transition for them go smoothly). I was a little concerned whether they would recognize me but everything went just fine. HEHE I cannot even fool them if I wear a halloween mask. They know my voice well!

OKEy doke. I need to get out for a little walk with them on such a beautiful day. take my first shower followed by lunch and a nap because after all, I am still a patient and my recovery has just begun.

Thanks everyone for your concern, encouragement, prayers, cheer, support, and for following along! I REALLY do appreciate it and it helps keep me going.

Have a great day! More later. :)

Tuesday, May 17, 2011

Room With a View

Becky is now in her own room and out of Intensive Care! She was able to eat some lunch - her first posy surgery meal was......... chicken! She's not being too gastronomically adventurous yet but was ale to keep it down and is now texting away like a madwoman! :-) She is in the Kohler Pavilion, 10th Floor, Room 3. The actual address to cpoy/paste is below. This building is a newish, very nice wing and it has a view of the tram and downtown Portland and if the skies clear, we'll also be able to see Mount Hood! Becky was up and walked a short distance today but her leg was really hurting her. We determined no blood clots, though - just a REALLY knotted up quadricep from laying on it all through the surgery. Good news all around and she seems to very quickly be on the mend. Thanks to everyone for your continued support, thoughts, prayers and well wishes!!

OHSU Healthcare
KPV 10, Room #3
Rebecca Dufek
3181 SW Sam Jackson Park Rd.
Portland, OR 97239-3098

Out of the ICU Today!

Becky hates the ICU... it is always where she feels the worst and it always seems to take forever for time to pass until she can get into another room. This time, her surgery was much earlier in the day, so she spent more time in the ICU, but she was much less sick than the last time, so it was a bit of a double-edged sword. In fact, I don't think she's thrown up once... but she does still feel nausea and does have pain, both at the incision site and on her leg, where she has a bruise, but she thinks it might be a blood clot. The plan is to get that checked out with an ultrasound this morning. She'll also be moved to her own room at some point today, but they aren't yet sure when, since it really depends on when a bed becomes available. Hopefully we'll get to talk to the doctor this morning as well for a debrief on the procedure and some more details on the results. Stay tuned!

Monday, May 16, 2011

Out of Surgery

Becky is now out of surgery and headed to get a CAT scan before going to the ICU. On the positive side, she's awake and alert and the doctors were able to remove most of the tumor and the cyst they were targeting. She does have some side effects, though, which include facial paralysis and some pretty major double vision. The docs say the problems should dissipate in the next six months. Overall, a very positive and successful surgery. When she woke up she wasn't sure if she had the surgery yet, and wasn't in pain or sick, which was her worst experience the last time around. They used Scopolomine patches this time to ward against the nausea and they seemed to work wonders. We can't wait to get in and see her!

Under the Knife

Becky is now in surgery and we just received an update that she is doing well, everything is stable, and they're starting their work. This is her sister giving periodic updates... Becky was up at the crack of dawn to check in at the hospital which was actually a good thing, since she said she was too tired to be nervous. She seemed very prepared and calm, even yawning as they were wheeling her into the OR! As always she was chatting up all the medical staff who came to get her ready for the surgery. :-) We'll keep updating the blog as we hear from the surgical staff throughout the expected five hour surgery. I just want to say thank you to everyone who is thinking of her and praying that all will go well... the support has been amazing and is incredibly uplifting for Becky. We are all so appreciative!! Special thanks to Shantelle Hoskins Pitts and her son Kaydin who came to sit with us while we wait for news. Shantelle has numerous cases of NF2 in her family, including herself and her youngest son who was recently diagnosed at just three years old. It's amazing how many wonderful people there are in the NF community, but a shame we all have to meet because of NF. Stay tuned and we're hoping we can bring more good news throughout the day!

Tuesday, May 10, 2011

The "Un-identified" object

For a little better view in order to see the object that my NIH doctor thinks is a cyst, click on the photo above to enlarge the image.

The plan......

The surgery will be performed by Johnny Delashaw and the OHSU neurosurgery team in Portland, Oregon. OHSU is the abbreviation for the Oregon Health and Science University where I have had my previous 2 surgeries.

The date will be Monday May 16th with the time to check in to be confirmed on friday.

The surgery to be performed will be the same as my previous 2 which is a debulking of the vestibular schwannoma via the retrosigmoid approach.

It is estimated my hospital stay will be 3-5 days following my surgery and then 4-6 weeks of recovery before I can return to the gym, running, hiking, and diving.

"How does the surgery work?" I have been recently asked in an interview.

All my hair will not be shaved off. For the last surgery they only shaved a little bit along the intended incision site which my long hair covered up. The incision is actually quite large though. It is the shape of a half moon or C extending above and around my ear ending along my neck. So perhaps it is about 4 inches. I will have to measure this time.

Once they open the skull, they use a retractor tool to life up the back of the brain called the Cerebellum. The tumor is behind it, so they need to move it out of the way in order to freely access the mass Then they will cut into or puncture the tumor and use a sonicator (like the instrument used to vibrate the tartar off your teeth during a dental cleaning) to break up the inside of the tumor. Then they safely remove as much tumor tissue as possible without damaging nerves and structures attached.

It was once described to me like scooping out the inside of an orange.

So yes, that means to peel or "shell" and some tumor tissue will be left behind.

The surgery typically takes 4-6 hours.

Waking up in recovery is a B_TCH! I personally do not tolerate it well and the first time around was pretty scary. On my second surgery they were able to administer anesthesia a little gentler on me so I was not waking up VIOLENTLY throwing up and convulsing. Yet I was still throwing up and had pain. It was just easier going than the first. That part makes me really apprehensive and I do not look forward to.

After I get out of the hospital I will be staying in Oregon with my parents for the first couple weeks of recovery. The first week is really challenging and I need a care giver to help me......most especially with giving me meds on a consistent schedule.

Okey doke. That gives you the basic gist. I need to hit the hay. We are going to try out a dive tomorrow and then leave for the Oregon coast for a few days on Wednesday. Nighty Nite! :)

When "brain moles" get busy

These are my MRI images taken at the NIH over the last year. The most recent image is on the left with the image on the right from a year ago and the one 6 months between each.

Actually, my brain looks rather fantastic compared to prior to my first brain surgery in 2007 when tumors on either side of the brainstem were nearly pinching it off. Even so, the last tumor operated on is showing signifcant growth which the doctors want to address before it grows too much and causes problems by putting pressure on the brainstem again.

By the way, if you have not already figured it out, the white stuff are the tumors. The image series on the right is a different perspective and plane of viewing my brain from the top down. Yes, that white you see are other tumors. In all honestly, I have never been certain of the exact number of tumors in my brain. We deal with one or 2 at a time which are most concerning (the ones surrounding the brainstem). Otherwise, to consider them all is quite overwhelming.

It is difficult to see but there is a dark shaded area protruding from the left side of the mass. That is thought to be the cyst which the surgery team plans on draining.

Friday, May 06, 2011

What does an MRI machine look like?

These are images from my last visit at the National Institutes of Health. Every 6 months I have pictures of my brain taken using the Magnetic Resonance Imaging machine and every year of my spine. Then the images are compared to images taken 6 months to a few years prior to assess if there has been growth of the tumors. Sometimes the growth can be minimal as the tumors are generally slow growing. So that is why images are compared over a long span of time to accurately determine how much growth is taking place. My recent scan was compared over 3 visits (so a year and a half) and you can definitely see the tumor getting bigger. The one we are talking about is next to the brainstem and a cyst either filled with fluid or blood is protruding off of it. While some tumors have leeway to get quite large, this tumor does not because it starts to impede my brainstem.

The "Beasts" are on a rampage again!

Where do I start? Hmmn....Well first of all, don't be concerned about my lack of posts this year. That really doesn't mean anything. Truthfully I have been too busy "living the life". After the holidays what transpired were a few foundation events with very small and short speaking engagements but none the less required me to think about and prepare for, snowshoe season, 4 trips to Oregon, a visit to the NIH in February, a major involvement with recruiting and leading my largest team (32) in the Leukemia and Lymphoma Society Big Climb March charity event successfully exceeding our fundraising goal, running 2-3 times a week, my regular weekly session with my trainer at the gym along with my consistent strength training 3 days a week, early commencement of hike season (just finished my 8th hike for the year Wednesday), LOTS of connecting with patients around the world, exercising the dogs regularly, and pondering a major medical decision all the while trying to keep up with my normal duties as a wife. Oh yeah, there was a last day of interviews for the upcoming movie too. I keep pretty busy so all that living either left no time to blog or just plain tapped me out! ;-) So sorry for my absence.

Upon my 4th visit to the National Institutes of Health where I am a participant in a natural history study of NF2, we recieved the completely unexpected news that I have had a tumor regrowth of the mass operated on in Oct 2009 - only a year and a half prior! I could not believe it! Harley and I went around battles where I could not accept the situation as concerning as it is. In fact, I pushed it off mostly for a month directing my focus on the Big Climb preparation. My surgeons both on the east coast and west coast concurred that they wanted me to get surgery soon. My inclination was to not schedule until the fall (hehe AGAIN) but neither doctor felt it would be a good idea to wait that long.

The consensus is that I am fit and healthy which makes me a great candidate. The doctors want me to have the surgery while I am strong and before I become sick to offer the best chance of a promising recovery. However, when you feel on top of the world it is very difficult to agree to putting your body through intense trauma and pain which carries significant risks. It is just plain tough and although I made a decision in March, since then I have been playing the conversation back and forth in my mind of convincing myself why I do or do not need surgery. There have been days where I wonder if this is the last time I will be able to traverse a particular hike in the mountains, freely walk again with my hands in my pockets, drive from point A to point B, trample along a narly riverbed shore, or a slew of things. I have often questioned myself in the preceeding weeks if I am making the right decision. Even though I am in the shape of my life and most likely in the club of the fittest patients, some things in life are just beyond our control and out of our hands. The possibility that some fluke thing may happen always exists and in regards to that I wonder if I should have waited just to carry out the fantasy a little longer.

In the most difficult of days trying to connect and find a way to describe the experience, I relate the situation of when to schedule surgery to being on a sputtering plane flying over the wide open ocean. The plane for whatever reason is running low on fuel and you do not know if there is enough to get you to a continental mass safely where you can land. Hence, your options are to sit on the plane hoping to find land when it is likely to crash into the ocean or you can jump out of the plane with a parachute. If you have never jumped out of a plane before and you are terrified of heights, your anxiety will be running wild! But if you are in a situation such as I where you have been there before, let's just say that it did not conquer your fear of heights and that your prior experience inflicted pain. Maybe you broke an arm or leg. Therefore, you would be in no hurry to feel that way again. So instead of jumping out immediately, you sit there and debate with yourself about it. Meanwhile you hope that somehow the plane will magically find land as you are thinking so you do not have to jump out afterall.

So I made the decision to jump. Before the whole plane dilemna I had been engrossed in a really good book. Now that it is time to jump, I hope I am able to find the book again. The book is my quality of life. Surgery always carries risk that you might not be able to return to the same quality of life afterward. That is the scary part. I suppose it would be like jumping through a worm hole. It is likely that you will be just fine BUT there is always a chance that an oddity might happen and your particles are scattered out into the universe or your body does not rematerialize correctly leaving an arm hanging out of your abdomen.

On a better note, the finality of my cancer treatment and commencement of my remission anniversary is this month! I am incredibly grateful for my life and the additional 18 years I have been granted. They have been a thrilling adventure and I have to say that I am really quite blessed. It has been such a joy to do things again which were hindered after the radiosurgery but returned or improved after the first surgery. It is so interesting how deeply you appreciate something after it has been compromised or was lost.

Sunday, May 01, 2011

Finding Your Center

In pursuit of peace and serenity -

I will explain more later but right now I need to get ready as we are taking off up north and this beautiful fine sunny day to catch the very last weekend of bloom in the tulip fields of Skagit valley which are as abundant as those you may imagine in Holland. Although I seriously lack in the green thumb department, I am incredibly appreciative of the marvelous work of others. Visiting beautiful botanical gardens and wonderous flowers brings a calm over me of peace and contentment.

Last weekend we went to Seattle to visit the lovely Volunteer Park Conservatory which is a traditional place for me to visit to destress. Afterward we ventured out to the beach of Puget Sound at Golden Gardens park where being by the water is theraputic for both of us. Today after visiting the floral fields, we are going to take a little adventure to the famous and treacherous but breathtaking Deception Pass.