Sunday, September 30, 2007

Continuation of Homeward Bound by Rebecca

Yes it is true and I am happy to announce that Friday afternoon I was discharged from the hospital and on our way home! Thank you to my beautiful husband and family for EVERYTHING! The blog updates which I was able to read finally today are fantastic! I would love to write some long posts but my fingers are not fully coordinated yet so writing and typing is VERY laborious and slow! I am working on that though. :o) I assure you in due time I will answer all your wonderful messages back as I progress!

It was a very pleasant ride home with a nice little exercise break at a lovely fall rest stop, a trip to Bed, Bath, and Beyond to get pillows I needed for my head (must be elevated while resting and sleeping), and a stop for dinner at our favorite Thai restaurant in the South Center Valley. In addition, I occupied my time between finishing my book "Meeting God At A Dead End" and watching the phenomenal underwater footage of my DVD series "Mysteries of the Deep" by Sport Diver.

The puppies (hehehe well I guess they are 6 now but will always be my puppies/babies) were happy to see us and very gentle. I got them each a toy at the Bath store to share and they were treated to their favorite pig ears.

All went well and I think I actually made a record for the week of getting 6 hours of continuous sleep which only happened when put to sleep under anesthesia for the actual surgery. Wow!!!!!! The much needed rest made for restful and relaxing Saturday!

Thank you all again for your posts, letters, emails, cards (which was fun to open today), flowers (which I LOVE), prayers, encouragement, admiration, help, and the list goes on! Today I had an idea to put everything in a nice scrapbook which my mom is really GOOD at! ;o)

Friday, September 28, 2007

Homeward Bound!

Well, Becky, Harley, and my mom just shoved off toward home! Beck was discharged from the hospital this morning having had the IV taken out, no sickness overnight, and a hearty breakfast and lunch to top it off. The worst part of today was getting all the knots out of her hair!! After not being able to shower for a few days after surgery, she would have looked right at home in Jamaica with her dreadlocks! She also had her most challenging physical therapy session since the surgery. They had her going up (no problem) and down (very challenging) the stairs! Her walking is great and she can get around on her own, but she'll likely have a walker at home to help keep her gait straight and give her some extra stability. We don't want her falling now that she's gotten this far! Thanks again to everyone! We couldn't have done it without all your words, actions, thoughts and prayers through this time. I'm so happy to see how quickly Beck has bounced back. I have to say, though, I was never really worried about her. I know that she can do amazing things and I am so proud to have her as my sister! Now you can look forward to the true author of this odyssey to take over once again! Thanks for reading!

Thursday, September 27, 2007

A Good Day

Hello everyone. This is Becky's brother Scott filling in while she's recovering. Today was a great day for her. The major news of the day is that Becky had a visit from a neuro-opthamologist and a bunch of med students that came with him. As he looked over Becky he quizzed the students on her condition. Harley came in "head of the class" as he was able to answer all of the doctor's questions that stumped the students. The end result of the evaluation is that Becky's double vision should go away as the swelling from the surgery decreases. It may take up to two months for her double vision to completely resolve. Although the night was a bit rough for Becky; she had a good appetite and was able to eat and keep down everything she consumed today. She also walked around quite a bit today and all the doctors and physical therapists are amazed at her speedy recovery. Mom, Michelle, my wife Denise and I went to the Nike employee store today and were able to pick Becky up some comfortable exercise clothes that will work great for her physical therapy exercises when she gets home. Speaking of home, Becky will likely be heading home tomorrow or Saturday depending on whether or not her nausea subsides. Well, that's the second half of the day in a nutshell. Thanks for all your thoughts and prayers; they are working great! Becky says thank you very much for everything and she will respond as soon as she can. Take care!

Still a Few Hiccups

Poor Beck had another pretty sleepless night, but was finally able to get a good two hour block of decent sleep very early in the morning. After dinner she felt swell, but as the night wore on, she developed, of all things, acid reflux! So just as she should have been getting to bed, the nausea came back with the reflux on top of it. She got some intermittant fitful sleep, but when she was awake was miserable until about 4:00 am. Not to mention her bathroom breaks just about every two hours on the dot. BUT, about 7:30 this morning, she woke up feeling much better, and even felt well enough to take a walk down the hall and watch as the sun rose next to Mt. Hood. (beautiful) We then worked on a puzzle, ate a great breakfast (and kept it all down) and eventually the Physical Therapists came again. All of the coordination tests they had her do were very challenging, but she did so wonderfully! They had her squatting, and after just a few where someone held her for balance, she could do them on her own! She also did quite a few leg lifting exercises. The neuro-opthamologist met with and did tests on her eyes to try and get to the bottom of the double vision problem. However, she's now up to reading a few of her books (with one eye covered to prevent the double vision when she looks down) and ate all of her lunch this afternoon, too. Things are looking up and the nurses say if she keeps everything down and drinks enough water they'll have her off of the IV in no time. Oh, and while she was feeling good last night, the family played a few games of chinese checkers; Michelle and Denise were the champions! LOL I'll check back tonight, but so far today is going great!

Wednesday, September 26, 2007

Best Evening So Far

Great news from the recovery room! When my mom and I came back to the room, Harley, Scott, and Denise were all there and Becky was talking like a magpie! It was so great to see her smiling and feeling better. She was finally able to hold down some dinner (roast beef and potatoes, and later a snack of applesauce) and there were several beautiful flower bouquets on the window sill! She's still in some pain and has double vision but she's doing much better. The new nausea medication she's on, Reglan, seems to be working better than any of the others they've tried. It's also been nice to get feedback on the comments board... thank you Gale! She was very comforted to hear your double vision after the surgeries went away and that you were so confident in Dr. Delashaw. Well, it looks like we're going to settle in for another night, one where Becky hopefully can get some good, quality shut eye. Check back and have a great night!

Baby food mess

This is Harley, Rebecca's husband taking over for Michelle who has been doing such a great job posting. It is about 2PM and Becky's mom and sister are (hopefully) getting some much needed rest as they stayed up with Becky most of last night. Becky did a full lap around the hallway.....she just kept going, and going. The physical therapist was amazed! She still has double vision, facial weakness, and up-chucking EVERYTHING! She ate a little baby food applesauce today and then I helped her to the bathroom where she projectile vomited right on my Keen sandal! Good thing there was a hand shower and a floor drain right there LOL.

Other than that, her color looks great and she is just as mentally sharp as before. The incision is very clean looking and I am sure it will heal up nicely. She looks so cute lying in bed, but she doesn't beleive me when I tell her that. Right now she is just working really hard trying not to be sick.


Slow and Steady Wins the Race

It was a rough night, but not nearly as bad as Monday night for Becky. She couldn't get much rest because of the nausea and bathroom trips, but the pain seemed to be a lot better. Mom and I stayed with her through the night, helping with the bucket and the bathroom, but really mom did most of the helping. I did a fair amount of head rubbing, though:-) Today, applesauce was a better choice to try and she was able to keep down a bit of a pancake. The double vision is continuing, but it probably will for a few more days. The best part of the day for me was seeing Becky walk up and down the hall! The physical therapists came to walk her around and she shuffled all the way down the hall in both directions, making sure to get to the window at one end to see the fabulous view over Portland. The hospital really is in a beautiful location, and I'm sure the scenery is a big help for people! Thanks to everyone who wrote comments in to the blog! When Becky is feeling up to it, I print them off in large type for her to read, and they've been a wonderful help. Things are going well so far! Mom and I will rest a bit now and be back with another update as soon as possible.

Tuesday, September 25, 2007

Jell-O(h) No!

End of day two, and Becky has finally gotten some sleep today! She tried some food around lunchtime... red Jell-O. It did give her lips a nice rosy color, but it ended up as rosy throw up a few minutes later. So, she's still getting over being sick, presumably from the anesthesia, but she's getting some well needed rest. She's slept for several hours today, but when awake complains of double vision. That is worrisome, but the nurses have said it should fade in a few days, along with the slight swelling she has in her face and hands. As proof of how well she's doing, she was only in the Intensive Care Unit for a half a day. She would have moved out sooner but there weren't any rooms available. Just before 7:00pm, a private room on the general floor opened up and Becky likes it a lot better than the ICU. So do we! There's a nice bed for someone to stay overnight with her and a window facing the other buildings on the OHSU campus. (We just missed getting a room with a window facing downtown Portland.) Hopefully she can hold down some food tomorrow. Until then, I hope she's having dreams about delicious Thai food, the ocean and her puppies Katie and Jake!

First Day After Surgery

We're heading over to see Becky now. She was awake until late last night asking for things:-) Rest assured she has her information binder, book with satellite pictures of Earth, and hand lotion! Harley has been by her side since she awoke after surgery yesterday... today we find out how the post-surgery CT scan looks. I'll let you know as soon as I can. Have a great day everyone and thanks for reading!

Monday, September 24, 2007

Going Strong!

We received updates around 5:00pm and 7:00pm as the surgery progressed. Everything went very well and the surgeon came down to chat with us as the procedure was wrapping up. Basically, it went great! The two tumors (Acoustic Neuroma and smaller Meningioma) being targeted were found and the doctor said they were both very large... larger than we initially thought! The meningioma was taken out (completely I think). He also found that with Becky's previous cyberknife radiosurgery on the AN (larger tumor) the tumor had fused to the brain stem and facial nerve, so he got as close as he could without doing any damage. BUT, that means more surgeries depending on how fast the tumor grows back (which we were expecting). As the night drew on, we were one of only two families left in the waiting room... even the receptionist had gone. Around 10:00pm the phone in the waiting room rang so my mom picked it up! It was good news about Becky's surgery, and she could hear Becky in the background saying she wanted to get up... a great sign so soon after! So, after all that waiting, we were told it would be another two hours before Becky would have another brain scan done and get settled in the recovery area to sleep for the night. So, we decided to get some sleep too and see her bright and early in the morning, when I'm sure her urge to get up out of bed will still be there!:-) Stay tuned...

Rolling Into the OR

Just before 3:00pm Becky was rolled into the operating room for her brain surgery at the Oregon Health and Science University hospital. She impressed the anisthesiologist when she rattled off all the correct medical terminology in detail when asked about her procedure! Just before heading off, she was understandably nervous, but strong and ready. Now, we wait. The surgery is expected to take several hours and I'll update as soon as we hear anything! Thanks for reading... check back soon!


Becky's sister Michelle here with an update before the surgery:
We're counting down the minutes until it's Becky's turn to go into the operating room. So far, things have gone smoothly. There were a few wrong turns getting to the hospital at 6:00 this morning so we took the scenic route despite the GPS sytem 'Lola'. Once we got here, the process of just getting ready for surgery has been long, but Becky (as always) has remained in great spirits! I think she's ready to make sure the "evil twins" (what she calls the two large tumors at the back of her head) can't do any more damage to her brainstem and are put in their place... (a research lab! I'm sure she'll post more about that later.) As a family, we're very grateful to everyone who has played a role in helping Becky in her journey. The Odyssey continues and we're learning more everyday about ourselves and NF2, and we're ever more grateful to have Rebecca in our lives. Her fierce determination and will, wonderful spirit, and strength are great reminders of how to truly live and enjoy life to its fullest. Please keep her in your thoughts as she faces yet another challege head-on! Thanks everyone and I'll get another short update out when all systems are go!

Sunday, September 23, 2007

Where will the tumor go?

One last quick note-

What will become of the tumor tissue once it is removed?

On short notice we were able to still make immediate arrangements for it to be tranfered to Coriell Cell Repositories in New Jersey. There, the cells will be cryogenized (frozen) and catalogued as the 7th NF2 tumor sample of their collection. Because NF2 is a rare disorder there is not a surplus of tissue cells for research. Therefore, they are currently in search of NF2 and schwannoma tumors. Once preserved, the cells will be available for use by any researcher in the world looking for the missing link to cure NF2.

For those who don't know, the founder Dr. Lewis Coriell played a part in bringing the first polio vaccine to the public in 1940. Click on the lighthouse link to learn about the Coriell Institute and what other research they are conducting and specimens in need of donation for their collection.

Saturday, September 22, 2007

Super Saturday (2 days pre-op)

Today was absolutely magnificent! It was one of the best birthdays I think I ever had. Again the weather was gorgeous at the beach so much so that it was sad for us to leave. All good vacations come to an end and it is always good for them to end on a good note so there is an excuse to go back.

The ride to Portland from the coast is so pretty! The road meanders along a pleasant country creek with twists and turns and moss clad deciduous trees clustered on the road side and along the bed of the creek. In between the tree shaded sections all of sudden pops out rolling pastures and hills with quaint little farms and cozy country cabins. Every once in a while you will see a cute little country church as if it stepped out of a Little House on the prarie episode. Gosh I love that romantic nostalgia! It is like being in a storybook. Both the countryside farms and rural churches are a dying breed that I truly appreciate being able to still witness in the era of modernism.

Our countryside drive could not have been better on the opening day of fall. Even down in Oregon we had some nice color gracing the leaves which glistened beautifully in the sunlight.

Around 4 pm we met up with my family to celebrate my 36th birthday. Just as we have been blessed with the most amazing September weather on the coast, the same was for Portland. I don't why I have been so fortunate and blessed! It has been such a great week down here that I don't want it to end or the vacation to come to a close.

At my brother and his wife's where we also met up with my sister and mom and dad, we started out the celebration with an apartment full of balloons and a beautiful floral bouquet. After visiting we decided to try out something new and to explore the culinary tastes of Lebanon at the Karma Lebanese restaurant. We were not sure what would be on the menu but as soon as I saw couscous, chicken, spinach, and hummus I knew we picked a good spot. The food and decor shared a similarity to Greek which we really like. The dinner, ambience, and company made for a wonderful birthday celebration. It has been a couple years since my whole family has been able to be together all at the same time so it was even more special.

After dinner headed back to my brother's where we enjoyed our traditional dairy queen ice cream cake (does not last long in our is almost gone already), wearing funky and silly halloween embelishments and taking photos, and opening my presents. I got some great books and also a very nice zipper hoody and fleece pants from REI to wear home after the surgery. It was a very fun evening and thank you Harley, Michelle, Scott, Denise, and mom and dad for helping me celebrate and make it special!

We are now at the Comfort Suites where they offer discounts to OHSU patients and families. The rooms are very nice (much nicer than what was available and the price when we went to Stanford in 2004 and stayed in Palo Alto, CA). Mom and dad and Harley and I are staying here. Michelle is staying with Scott and Denise.

Tomorrow our friend KC (who came with us and his wife Dianne to my cyberknife treatment in 2004) will meet us in Portland. He is taking the Amtrak and we will pick him up from the train station at 6 pm. Tomorrow is the last day for us all to spend together before the brain surgery. It will be an early evening as I have to be at the hospital at 5:30 am on Monday. I am scheduled for 6 am but that means I will be sent to put on the gown and get ready. I need to get there a half hour earlier to first know where we need to go and then to spend some moments with my family.

Tomorrow will probably be pretty busy so this is most likely the last I will write until I am recovered. Thanks again everyone for your love, encouragement, help, prayers, humor, and belief in me! I could not have reached this point without all of you. Thank you for being by my
side! I feel very comforted and very prepared. I'll see you on the other end!

Love, Beck

Friday, September 21, 2007

Peace and Reflection Friday - 3 days pre-op

I can see why writer's frequently come to the shore to open the mind for inspiration, creative thought and positive energy. Today was such a day for me. The warm sun and cool ocean breezes and backdrop of the crashing waves on the shore invited me outside to take in some enlightening reading.

It was a perfect way for me to again put things into perspective, seek meaning, and complete my peaceful meditative state for continuing the journey (my odyssey) which lay ahead.

My reflection and reading this afternoon is important so I would like to share it with you here.
The following is from the book "Meeting God At a Dead End" by Ron Mehl published by Multnohah Books of Sisters, Oregon.

The passage (cited by Paul) found on page 127 is taken from 2 Corinthians 4:15-18

"For all things are for your sakes, that grace, having spread through the many, may cause thanksgiving to abound to the glory of God. Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal."

In the early evening while the sun was still high, Harley and I took a walk down the beach heading south this time. I wanted to revisit Bob Straub state park which we first encountered over 4 years ago and has been the inspiration of the calming ambience I have been working on creating in our bedroom. We were very taken with this stretch of beach upon our first initial discovery and took beautiful scenic pictures which I have framed in our room.

For Harley, achieving this mental release and peaceful state is new. There are many frustrations and stress when a loved one is faced with medical situation. It can be even more difficult and emotionally draining for loved ones than it is for the person with the medical crisis. The goal of the walk was to release all the worries from the mind and take in all the senses and to appreciate them and reach a state of well being. I have been working to acheive this state for many months and even praticed prior over the years. My plan was to walk on top of the sand dunes among the dune grass on a new and undiscovered route to fulfill my delight of exploration. Harley's choice was to walk barefoot along the beach once he reached a state of destressing. We would meet on the beach within a half hour.

It went wonderfully. By the time we met the sun was begining to set and we were able to sit and converse with the backdrop of the powerful crashing waves and the tickle of light leading across the water from us to the sun. On the walk back the sunset became even more glorius! It was perfect, sureal, and like a dream. As it slipped over the horizon, the play the sun's rays colored the gentle clouds overhead pastels of pink, yellow and lavender among a faint blue sky.

I had more nerve attacks to my face today (3 in total) but due to my relaxation and destressing I was able to continue whatever I was doing (conversing, cooking dinner, etc.). The first time was very scary and painful last week but when theycome I try to detach my mind from the pain in my face knowing that it will subside in a matter of time and I will go on.

Tranquil Thursday

From "Beaches" by Gideon Bosker and Lena Lenzek -

"Beach bums from infancy, there could only be one place with the power to rock the soul and feed the heart- and that place was and continues to be, the beach."

I had mentioned before about my quest for a peaceful meditative state for my mind to reach upon approaching the surgery. I have always loved being surrounded by nature in many forms but what ignites my passion is water's seductive lure and most notably the mystique of the ocean. There is just something about the flow of water and waves that is hypotic and calms the mind. So naturally, it has been my desire to somehow return to that place in my being and preserve the warm comforting feeling water creates for me for when I most need it. As you know, I made 2 trips to the ocean since July and we are lucky enough to visit it again the week leading up to the surgery.

I can think of nothing more perfect. It is like a dream. I have attained what I was hoping for in mental relaxation prior to facing something I found impossible to bear.

The day was absolutely fantastic. My soul has been nurtured and soothed. It is a dream like I have told you.

Short synopsis:

kicked off our shoes and played frisbee in the sand and the afternoon sun

had conversation of our future with the glorious backdrop of the pounding waves on the beach

frolicked like a little girl dancing among the wet sand and teasing the ocean waves creeping after my feet (something I have only been able to do now after 3 years)

walking among the sand dunes observing all the patterns of the wind, grains of sand, different birds, and various footprints

observing all the little amphipods jumping out of the wet sand as we approached where the waves receded

petting a friendly dog also enjoying the evening at the beach

climbing a dune to get a better view of the waves, beach, and sunset

discovering rocks, shells, and a beautifully designed sand castle

watching pelicans fly overhead and seagulls walking among the beach

watching the powerful waves beat and splash against the rocks at Cape Kiwanda

observing stunning and delicate pink cloud formations overhead from the setting sun

sitting on top of the dune cliff watching the moon cast its light down on the water while the pink and lavendar sunset fades

taking a moonlit stroll back to the beach house in the misty light of dusk

cooking salmon and spinach salad with honey dew melon to close the day

I did have another trigeminal neuralgia attack while cooking dinner tonight. However, I achieved such a state of tranquility that I was able to keep calm and continue preparing our special meal. I am driven to not let it get the best of me. Tomorrow will be our last full day at this little slice of heaven. Saturday (my birthday), we head back to Portland to meet up with my family (sister flying in from Idaho, mom and dad driving up from Veneta near Eugene, my brother and sister in law in Portland). I am looking forward to seeing and spending some time with all of them for a couple days.

Thursday, September 20, 2007

What Luck! Body Worlds 3 in Portland presented by OHSU

So our quest for peace, prespective, and harmony to getaway from surgery fears or see it in a different light has begun! I would truly recommend this to anyone to do prior to a major medical procedure if there is time and it is feasible. Make the time! I actually began this search in July but I do not think Harley had reached it yet as he became more high strung over the last week.

When we awoke we explored a little around the riverplace area in Portland near Dave and Christie's condo. In the morning paper we noticed that "Body Worlds" was actually on exhibit at the Oregon Museum of Science and Industry and is actually being presented by OHSU. How incredibly cool! I learned of the technique of plastination to preserve bodies for scientific study, eduction, and understanding years ago on the Discovery Channel. I have longed to see this exhibit since! I could not believe it was actually being shown in Portland at the same time I am here! If I had gotten my surgery on the original later date the exhibit would have already been packed up. LOL So visiting the OMSI to take in the opportunity was a no brainer.

While exploring the local area on foot (a block), we found the wonderful Marina Fish House Floating Restauraeant where we had a MARVELOUS lunch! I had the Washington Steelhead salmon which was simply perfect and melted in my mouth! Afterward, we took in the view of Portland from the restaurant dock and discovered that OMSI (the museum) was directly across the water from us! Thus we headed to OMSI to see the famous Body Worlds exhibit!

Absolutely fascinating!!!!!!! I am so glad I had the opportunity to see this wonder! Being a science buff and needing to read EVERYTHING, I of course took my time absorbing it all in! LOL Harley finished before I did. (I am like that in aquariums too!) ;+)

Some people may not think this would be so pleasant to see or think about before a surgery but I found it totally fulfilling and actually put me more at ease. It was interesting to see the inside of skulls and beautifully and artistically displayed brains while thinking about where the incision will be made and what part of the bone they will need to remove to access the tumor. They had slices (cross sections of brains) too where one could see a tumor, a hemorage from a stroke, and hydrocephalus. For me, such an experience enhances my understanding and definitely increases my appreciation for those who dedicate themselves to the medical profession.

I could go on and on but I will let you check out the link for yourself.

After we finished (Or I finished) the exhibit, we headed out of Portland to Pacific City, Oregon where we will spend a few days gaining serenity, rest, and relaxation on the beach of the Pacific coast.

Trigeminal Neuralgia update:

Yes unfortunately it has returned but knock on wood it has not been as severe as last week yet. I felt it coming on at the bodyworlds exhibit. It is scary as I want the rest of the week to go well and I CANNOT and WILL NOT take the Tegretol again. I just can't go through the rest of this week the way I did last weekend. The episode at the museum was mild like a soft knock at the door but frightening if it is in the middle of the night and you don't know who is on the other side.

Later at midnight or 1 pm a full attack but still not as bad as the first. We have begun debating whether or not to increase my steroid dose. I prefer to not if I can hang in there and help it. Steroids can have bad effects as well and at the present dose I am doing well. I will have to take steroids for a couple weeks after the surgery so I do not want to take more if I can help it. I had a bad time with them in 2004 and 2005 which I do not want to revisit. I just hope the surgery allieves this problem (trigeminal neuralgia).

Pre-op appointment Tuesday 9-18-07 at OHSU

Tuesday we headed out at 10 am for our 2 pm appointment in Portland. The nausea calmed down and was much better leaving me able to eat again. PHEW!!! However, very LATE in the evening prior I was struck with ear pain in my left ear (opposite of the surgery side). The surgery instructions stated that I was to stop taking anything herbal 1 week (preferably 2 weeks) prior to the surgery. Therefore I did not take any echinacea, multivitamin, vitamin C, or anything else. I thought the ear ache would pass as it had been appearing off and on over the past couple weeks mildly at night and then would disappear by morning. Because I was so out of commission on the weekend, I was awake early, all day, and into the wee hours of tuesday morning making sure I had everything I needed. As a result, with the reduced immunity on the steriods, the stress, and trying to gather everything in the last day I picked up something.

The ear ache accompanied by a headache and fatigue carried with me all day Tuesday. I had the physicians assistant take a look and he could not see anything but proposed I might have picked up a cold or something viral to keep an eye on this week.

The pre-op went well. There was a mistake with reserving a captioner but it still turned out as every examining room is outfitted with a complete technological computer setup and a word processing program. Thus Dr. Delashaw's assistant Steve typed out everything and it worked really well. I feel we had all the questions we could gather in our brain addressed. The entire appointment lasted until a little after 5 pm (no pokes or blood draws either!! :oP )

Afterward we went to the beautiful Spagetti Factory restaurant in Portland just near the hospital on the Willamette river with friends Dave and Christie. They invited us to stay at their condo in Portland just a hop skip and jump up the road from the restaurant and the hospital. We had a lovely evening visiting with them and fortunately some orange juice, acetametaphin, and a good night's sleep cleared up the pain in my left ear by the morning.

Thanks Dave and Christie for your generous hospitality! We had a stressful few day and you really helped us to unwind after a crazy few days! Food, good conversation, a relaxing atmosphere, and a good night's sleep is really what we were needing!

1 week pre surgery agt OHSU in Portland, OR

Quick note-

I cannot take the Tegretol so I stopped that medication Sunday afternoon. THANKFULY I was able to eat again and even cooked and ate a chicken pizza.

I wrote a bunch and just deleted! I am trying to use a laptop keyboard which is hard. I use ergonomic at home.

I was still woozy monday but was able to eat all meals and be productive getting ready.

Skip brought me homemade pear applesauce and Yumi treated us that evening to my favorite yummy thai food! She also helped me polish off all the last getting ready tasks and cleaning.

Everyone's help this past weekend is appreciated more than we can express!

ok. Gotta go!

I am enjoying feeling better and eating food! - Beck :o)

Sunday, September 16, 2007

Sucky Sunday

Oh I feel so sick again. Right now I am trying t eat another cheese stick. It is cold and not sweet. Sweet things makes me gag. I am so sick that I don't even want to drink water unless I really have to.

My friend Angel came over today. I was sleeping on the couch for the first hour she was here. She visited with Harley which was a good thing. Then when I awoke she helped me fold laundry. Actually SHE folded the laundry and I slowly put it away. She gives the BEST hugs! It was nice to see her and to get 2 of her special hugs. That comforted my day!

My beautiful birthday lilies are opening which excites me and creates a pleasant distraction from my malady. It is like when you see baby chickens finally hatch out of the eggs.

I could take it no longer. I asked Harley to call the pharmacist to see if I could get some kind of relief. It is so hard to do anything. I am still in my pajamas and I will stay in them the rest of the day. My head hurts, eyes, muscles are sore, my head feels hot, even though I am deaf my ears are ringing and I cannot hear my own voice anymore, and everytime I move around or sit up I feel like I am going to vomit. It is just awful! The cheese stick feels really good.

The pharmacist said to talk to the doctor so Harley called and spoke to whoever was on call and on staff today. I am to stop taking the Tegretol (hope that does the trick!). My next dosage was to be at 4 pm. The on call doctor felt it was the Tegretol making me sick as it started yesterday and I began the Tegretol at 3 am Friday morning. The steroids I started Tuesday night.

If the pain comes back I am to take the Tegretol again but cut the pills in half. As far as the Zofran, doctors do not like to prescribe it unless it is really needed. First of all, it is INCREDIBLY expensive. Second of all, we don't want to get too many drugs pumping through my body. Thus, I will try going off the Tegretol which hopefully works. If I am still sick, then tomorrow we can get a Zofran prescription called in.

I need to concentrate on typing up instructions for special care I need at the hospital, my meds and supplements, and things I need to pack. It is SO HARD to do right now. I just want to lie around. It is no fun being up when so sick!

The dogs know something is up. Katie lied around depressed all day yesterday even though Marlen had offered her a nice tasty basted raw hide bone which she LOVES. Jake was accepting but it is HIGHLY unusual for Katie to pass up ANY treat. Jake has been sitting outside the kitchen sliding glass door looking inside. He looked really sad this morning. It is raining now so they are probably in their dog houses.

How am I doing?

TERRIBLE! AWFUL! I just threw up violently again so I am trying to eat and hold down a cheese stick so that I can take my Diamox medicine for the eyes. I am late on taking the Tegretol by an hour and 20 minutes now. The reason being I was so sick that I meandered upstairs and fell asleep. When I woke I tried to eat some rice pudding which encouraged a violent hurl when I was done.

So now my stomach is empty again and I cannot take the medicine. I am trembling sitting here trying to eat this cheese stick so I can take the medicine. Maybe if I successfully hold it down I will eat another, take the meds, and go to bed really quick before I hurl again.

I hate being sick. I hope I will not be sick all week and for my birthday. I guess no matter what, surgery or not in a week, I would have been sick anyhow. I guess it is good that I will go through a week of this instead of month. This really stinks.

On top of that, my face is starting to swell like a pumpkin head again. I could feel it coming on this evening. When I awoke my face was swollen.

One of the positives of the day is that I had some gracious friends come over to help us. I am so glad because it was hard enough to do some laundry.

Thank you Marlen, George, Karen and Sam who super duper cleaned the whole house, and Kristy. I would not have been able to do any of the things you did. It was nice to see and visit with you and you motivated Harley and I. I am glad I made those darn lists a week ago. There is no way I could have done it now.

Thank you IMMENSELY for all your help!

I hope tomorrow is a better day. I don't feel like going through this all week. I need some Zofran!

Saturday, September 15, 2007


I am incredibly sick. I feel like I was either t0ssed upside down on the zipper at the fair or sea sick from 20 foot seas. I hate being nauseated!

This evening I had acid reflux that went up my nose. Ow! I don't know if it is from the steroids or from the Tegretol or the mixture of both but this really bites the big bunion!

I certainly did not expect or foresee myself as being ill BEFORE the surgery. I did not see it coming at all. Still it is better than not having the medicine and having the trigeminal nerve attacks which are very scary, painful, and emotionally exhausting.

I hope this goes away. I don't want to be sick for a week. That would be no fun to be sick on my birthday. Unfortunately I have no choice in the matter.

I just don't like being sick. It makes it very difficult to get things done and get prepared as my stomach churns everytime I get up to do something. I fell asleep earlier on my bed because I was sick after taking the last steroid dose. I don't know if my mistake was making a mango smoothie to take with it that had too much of an acid content. Or maybe I just did not have enough in my stomach to make it agreeable. Of course I have to hold my cookies because there is no way I want to upchuck the dose that keeps the nerve pain at bay.

I don't like being sick.

Friday, September 14, 2007

Nice Surprise Today

Harley and I went walking with the dogs in Carnation on the Snoqualmie Valley trail today to lead a walk with team survivor northwest.

On the drive home we were both really stressed out about the fast approaching surgery date and miscommunication of expectations on staying down in Oregon a week. (I got it in my head we were staying there the from the pre-op appointment until surgery which is less than a week. Harley thought we were driving back and then going back down for the surgery).

Anyhow, we were both stressed. It has been a stressful couple days and thinking clearly has been challenging. The trigeminal neuralgia episodes have left me exhausted and have had an effect on Harley too.

When I climbed the stairs to the front door after being frustrated, I found a pretty packaged green and brown box propped against the door. Inside the package were flowers from Harley's mom (my mother-in-law) for my birthday which is next Saturday.

They could not have arrived at a more perfect time! First of all I love opening packages and second of all I love flowers. What a great emotional uplift! The flowers are lilies (very aromatic when open) in nice fall colors (it looks like there are both orange and yellow ones) with a nice rust color vase to match. How exciting!

Harley wanted to open them right away and I told him the flowers need special care and we needed to read the directions before just dunking them in water.

This arrived at a perfect time as the flowers will be blooming during the time we are here.

Thank you Cheryl! That was so nice of you and it uplifted both of our spirits! :o)

Also, my mom gave me a beautiful pot of mums that looked purple or pink in color as they were not fully opened. We celebrated my birthday early over labor day weekend at the beach with my sister and her boyfriend's family.

Luckily I had an empty pot sitting on my kitchen window sill to which I wanted to buy a nice plant to fill it. The pot of mums fit in there perfectly and they are lovely! The centers are white and green with lavendar color on the outer petals.

Thanks mom! :o)

NEW 9 days and a few hours pre surgery

Wow! I feel really spaced out. Just a second my doctor just emailed me.

Ok that was really nice. The doctor wrote me a nice email telling me to hang in there.

Basically what happened is that the tumor is pressing on my facial nerve and trigeminal ganglia (maybe they are the same). As a result, I got shocking pain in my ear and face like I was being electricuted.

Steroids were prescribed to me (4 mg a day of decadron). Harley spoke with the doctor on Tuesday after the first episode which was really stunning (seriously like someone was shocking my face and ear with a tazer!). My surgeon wanted to move up the surgery if I continued to have these episodes after starting the steroids.

Let's just skip over because I am too tired to type. As of 3:09 this morning I had 9 episodes. The one last night/this morning lasted nearly 20 minutes. I got a different medication to also take for pain called Tegretol (did I already say that).

Anyhow, I am really spaced right now and LOL I was trying to figure out what was on my head and then realized I am wearing a baseball cap from my walk this morning!

Ok the new schedule:

I was kind of hoping maybe we could go back to the October date until I had the 9th episode this morning. Pooper. I guess that was a sign that I have to stick with surgery in 9 days.

I figured 2 things to come to acceptance of this:
A) The steroids seem to manifest the worst side effects in 3 weeks. If surgery is at the original date I would experience these bad things. Having surgery earlier means that hopefully I will not have to take the steroids as long and this trigeminal neuralgia will be relieved.

B) The steroids alone are not working. The additional drug I am taking really is not good for me at all but it beats having the pain. Having surgery earlier means having to take less of this medication over a shorter period of time hopefully. If I had the surgery later, we would need to keep increasing the dose of the second medication.

That means I would be on 3 meds. Not too good.

Additionally, the steriods affect the immune system so it is better to be on them a shorter time presurgery to lessen the chance of infection.

Oh yeah new schedule:

September 18th - pre-op appointment in Portland
September 24th - "the" surgery
After that ICU (best case 1 day) and then I am moved into a regular room until I can be released.

Wednesday, September 12, 2007

1 month 9 days before surgery OR SOONER

Don't feel much like typing right now. Yesterday (1 month 10 days post surgery) I had a scary episode and painful attack to the ear and upper cheek/jaw/face like electricution (who cares if it is not spelled correctly).

Anyhow sounds like Trigeminal Neuralgia. See the link in the post title by clicking on the lighthouse icon.

I just experienced my 4th episode that was not as bad as the first fortunately.

I am on steroids again (4 mg of decadron a day).

Today we moved up my followup MRI to immediateness (head and spine). Fortunately and thankfully my friend Skip brought me to my appointment. Harley was concerned about me driving myself to Seattle in the advent that I had another attack (which just so happened - 3rd attack- on HWY 520 approaching the bridge over Lake Washington.

Thanks Skip! I really enjoyed having you there with me. Harley and I GREATLY appreciate your help!!!!!

So we will play it by ear (funny pun eh....did not realize until after I wrote it). If the steroids do not alleviate the attacks and it continues, we will most likely need to have the surgery sooner.

I need to rest for now.

Have a good evening/sleep/morning/day!

- Beck

Monday, September 10, 2007

1 month 11 days PRE surgery

Wow! Time is totally escaping me! I have been doing fine but just very busy. Believe me I have no lack of things to write about. In fact I need some sort of telepathic electronic device to transmit my thoughts into a computer. One of those pads you talk into that Captain Picard had on StarTrek the Next Generation would be cool! I do so much thinking that I actually come to believe I may have already written something here until I visit and come to discover "Oh I guess I only wrote a couple posts last month".

I have drafts that I started writing and did not finish or post from a month or two ago and then I have a list here of at least six things I wanted to write about AND thought about last week. The problem is that I am always thinking of these things at an inappropriate time when I am not sitting at the computer allowing the flow of creativity to emit from my fingertips (my thinking happens when I am out walking the dogs, running, or should be or at least trying to sleep!).

Anyhow, I just put the time remaining into perspective and started the count. I did not realize it was that short of days until my surgery. That is less than a month and a half!!!! I thought I had 2 months!

There are lots of preparations to be made for surgery. In case you were wondering, that is what I have been doing. There is not time to mope around. I did that back in May and June (and maybe part of April). Now I have turned from grasshopper into ant. It is time to get things all in check as I really don't know what my state will be afterward or how long or difficult recovery be. I have made lots of lists: lists of things inside the house to do, lists of things outside the house to do, lists for keeping track of things I take care for anyone who may need to help me afterward, list of things to pack for the surgery, list of instructions to give medical staff, list of appointments I need to schedule before the surgery (MRI of head again and spine this time, followup visit with the neuro-ophthalmologist, dental cleaning), etc. lists.

As part of the preparation I also need to adhere to a better sleeping schedule which is VERY difficult! I thought last night would be a good time to start. The plan was to go to bed early and get up at the crack of dawn. Well 8 pm rolled around and I was just finishing cooking dinner! After taking my Diamox, melatonin, and chamomile tea I turned the lights out at 10:20 pm and had set my alarm for 6:20 am.

What a miserable night. I don't know if I was super anxious to wake up early and get a lot of stuff done but I had HORRIBLE sleep. The first time I woke up was about an hour after I laid down. I think I woke up about 6 times during the course of the evening. Everytime I would excitedly look at the clock hoping I got at least 4 hours of good sleep! To my dismay I was waking up every hour or two. The result was a big dang headache when it was finally time to get up and puffball eye lids! Surely that cannot be good for the brain.

Fortunately I was able to stay awake the whole day (it went by so fast) and I was able to take the dogs on an hour morning brisk walk, go to water aerobics, and lift weights for a half hour afterward. LOL After all that I was pretty tired but I managed to stay awake and just dosed off for maybe a half hour after eating dinner.

My goal tonight is to be in bed by midnight so I am going to have to end this here and maybe I will get to those other posts I wanted to write tomorrow (no promises though as these lists and tasks take priority).

Have a good week and send me good sleep vibes. I HAVE to get some consistent sleep!

- Beck :o)