the waiting is the hardest part

Dictated by Carina, typed by Lesley.

I know that people are asking for updates, so this is the best I can do for now.

On December 11, I had an infusion of the new treatment that my doctor’s had been recommending called Avastin. I got it at UC Davis (because I live in Sacramento, this is where my community is and it made the most sense). The infusion was in my left arm and it took an hour and a half and when it was done, about half an hour later, I could no longer move my left arm or leg to its normal ability. This persisted through the weekend, causing me a scare because all of a sudden I was unable to take care of myself.

I called my neurosurgeon in San Diego because he has always been very thorough with my care and he said that I needed to immediately go to an ER and tell them about what was going on and to get a CT scan to make sure that there was no brain bleed. I also called UC Davis to tell them what happened and they took 3 hours to call me back and tell me the same thing, to go to the ER.

I ended up flying to San Diego because my doctors in San Diego provide me with better care. I was admitted into the hospital for the night. A CT scan revealed no brain bleed (Yay, that’s what we wanted!), but a lot of swelling on the right side of the brain pushing over to the left. So I was immediately put on steroids to reduce the swelling and I was also given a drug called Manatrol to suck all the fluid out of my body. Neither of these things would help in the immediate sense to give me movement in my arm and leg on the left side.

I was sent home from the hospital on high dose steroids for a day and I am now slowly tapering off the steroids on a week by week basis. Though all of this came by a surprise, I wish to extend my love and gratitude to my friends, to my family at church, to Scott and Jennifer, and to countless people who have offered to help me in anyway they can, just to make being an invalid a little easier. I have tried to be strong because I thought that’s what God wanted me to do in all of this and it has been hard and I have lost my hope a couple of times but because of everyone’s help, each day gets easier and I can stretch my left arm a little bit, even though it still won’t move like normal. I can walk for the most part, but I look funny on my left side because my arm is basically dead weight.

Last night my friend, Marianne, took me to the gym to try and loosen up my muscles with a spa treatment. I was very buoyant in the water and almost fell over but got to relax for a little while, which was nice. I still cannot stretch out my arm, move it freely, or open and close my fist. At least my left leg is slowly coming back to life and if feels good to walk for the most part.

There have been people who have been so friendly. For example, a kind woman at the gym helped me get dressed after my shower because I could not do it myself. A stranger came up to me in the spa and asked if she could pray for my arm and she also gave it a massage. It is an uncomfortable practice for me to learn how to let other people help and love me when it is so hard to do things for other people. So a lesson I’ve had to learn is a little bit of humility and its been rewarding to watch how when I let someone help me, they seem to feel good about being able to be useful and sometimes just allowing them that opportunity is enough of a blessing for them as opposed to me slapping them in the face and rejecting their help.

Today I am excited to go out to a movie with a friend who struggled with breast cancer and who has been through quite a battle. We are going to go shopping and I am going to finally get some new walking shoes! We are also going to have a girl’s day at the movies.

I love everyone and I appreciate your prayers and support.

And Carina wanted me to type that I am awesome (she made me type it!!). And this is from Lesley – I love Carina and my prayers are daily going out to her!!

Peace Train

Here's a shot of me on the train ride home from tehachapi last month. It is from my fave seat on the train. The upper level, single seats just outside the train doors when you walk through the cars. A lone seat by the window. You can see from the pic that my hair is growing back in a messy fasion. I am bothered by it because I feel like I look a little like "Sham-bo." If you don't already know who that is, I'm not going to tell you. It's embarassing. lets just say that I have curls on top of my head and at the base of my neck. I feel like I've got a mullet forming.

to this, I say: NO-SHAM-BO!!!



Meanwhile, SN&R did a recent feature story on my little predicament:

Coming Soon: My Next Follow-Up

Nov 15-17

San Diego

Starring: Me
Dr. Alksne as the Neurosurgeon
Dr. Murphy as the Radiation Oncologist

With an MRI and a blood test and a whole lot of questions.


The past week has been ok has far as headaches go, but I do feel tired often. I'm concerned about some of the things going on in my head. I may have to have more treatment with a drug called Avastin. It's a chemotherapy type drug used to help clear up the radiation effect that is causing some of my problems. (headaches, fatigue)

I'm a little nervous but more anxious for the next follow up results. If I have to have additional treatment, I'm not sure for how long it will be. I'll find out more soon and will let you all know!

My Prime-Time Hospital Drama and Brilliant Docs

Here are some little pics of my Docs that you've all heard of so often.

Dr. Murphy, the Radiation Oncologist:






and the brilliant neurosurgeon, Dr. Alksne:




My docs feel like my MRI scan from September looks good. There's a bit of swelling and other radiation effect, but that was to be expected. I'm slated for a follow-up exam in November just to make sure that there haven't been any changes. At this point I'll continue to be seen every few months. I still feel mostly well, and can manage the headaches and fatigue with a little headache medicine and some tea. More to come soon.

More Pictures

Some of you know I've been working on a small craft project. It's a bulletin board in black to match my black/white room. The pics and collage on the front are pieces of the cards that many of you gave to me while I was sick and in and out of treatment. I love them! I pieced them together to match the colors of my room...this is how it turned out:



The pool outside my door. I forgot to add this one earlier when I was showing pics of my new place. The pool deep end goes to 8 feet.



Some pink flowers growing by the pool...what kind are they?

Sensory Overload

I am completely, 100 percent, in tune with my senses. All five of them. Over the passed week I have been experiencing several emotions in motion. I'm overwhelmed.

Let's start with Joy; I have a deep sense of it all day long each day. I am so incredibly happy to be alive. I can not wake up or go out or stroll along without feeling joyful consistently with every passing moment. I mean these things literally.



Its summer in Sacramento. Currently we are experiencing lower than normal temperatures for this time of year. Each day is incredibly beautiful and bright. Warm. I bask in this beauty all day long. I see beauty walking out my door, riding my bike, running errands. I feel the warmth of the Sun/Son. :) Nothing is hidden.



Its as if I was asleep before, and now my eyes are opened and can see clearly now. (I can see all obstacles in my way). I thought I was alive before, but it's hard to believe now-seeing, touching, feeling like I do today. Was I dead? I am hoping that as you read these words you understand exactly what I am trying to say. How did i exist before?

I remember my doctors telling me that staying on Dilantin for too long could have problems. They always told me that they would eventually switch my anti-convulsion meds to Keppra. They said that when people came off of dilantin it was like they suddenly "woke up." I'm sure that part of my energy over the passed week comes from adjusting to the new medicine, (and caffeine) but by no means is it the only excuse.




It's almost been a year since my Cancer diagnosis. I have learned much about myself throughout this journey. To what extent was I depressed before? How did I ever have or know a good time? Where did all my friends and loved ones come from (you're all saints)? I know I've laughed and had great times, but it only feels like I'm just beginning to experience life for real now. It's a humbling feeling for me. Wanting to fight feelings of toughness and pride like "I can handle anything" that comes my way, but trying just to appreciate the abundant grace that has been extended my way.


So comes the fear. When will the other shoe drop? Life can't stay this good for long... Please pray for me you praying kinds-I know that this is just a typical fear for someone who is use to drama and doesn't know how to handle when things "go right." :) I am hoping to live a long life, cancer or no cancer-it's irrelevant.



Awake, my soul, and SING!

Now, bring me that horizon

Drink up me hearties yo ho!

;)

The Joy of Living

I am now all moved and settled into my new apartment that is just a few blocks down the street from my old house in East Sacramento. I'm still nestled under the sycamore trees amongst all the old homes built in the 40's and off the side street from some of the J Street shops. I love my new apartment. It is the perfect sized one bedroom and I'm just off the pool. I've even got a wood burning fireplace!

Since my last update about my headaches, I've been mostly pain free. I had a bad week about a week ago due to some insomnia and stress, but I'm feeling better the past few days. Adam and I cleaned the old house and each got our own places just down the street from McKinley Park.

I took some pictures of the apartment. Ignore the clutter, come see it in person, it's nice. :)

The dining and kitchen area



My walk-in closet. Completely glorious!



The Living Room



I forgot to take a picture of the pool. More to come later. Now in the meantime while I am waiting to hear from UC San Diego about my next MRI I am keeping busy.

I want this

Electra Daisy

3-Speed Cruiser

This Is HOCKEYTOWN!!

Detroit is back, after losing 3&4 on the road. The Wings showed the Pens a 5-0 shutout. Pittsburgh couldn't keep their cool and my boys scored 3 powerplay goals.



Game 6 is back in Pittsburgh. Last year, the Wings won the cup in 6. Only drawback was winning on the road.

Life's been good to me so far..

The anthem of my life, the cry of my spirit; and the hope for my future.

I don't have a mansion or a fancy car or gold records on the wall, but I am dearly loved. I've been blessed with several good fortunes and countless gifts. I'm rich in spirit and in wealth. I have close friends that I can depend on, share a good time with, and be accountable to. I have a nuclear and extended family that loves and supports me in what I strive to do, and accepts me as am where ever I am.

Sure childhood wasn't easy, and I saw many things happen in my home that I wished I didn't, but I've got everything else. Yes, my parents went through a nasty divorce that put my sister and I in the middle of a few traumatic episodes. It's unfortunate that I only got to live in a house for a few years. I was put in a neglected kid's home while my sister got to be with dad, and I remember being left to fend for myself while my mother was out taking drugs and breaking the law, but so what? These are the earliest memories I have of when God started to teach me how to be brave.

"..They say I'm crazy but I have a good time.."


I have good health. I am looked after. Happily I am still able to look and care after others. I am living exceptionally well.

All the achievements that I've been able to complete to this day are great gifts that I can be proud of even though I belittle each one of them. I am able to make life happen for myself, instead of walking though it believing its made me. Even though I think these choices are easy and there's no excuse for not doing them, I guess it's kinda cool that I have.

I don't feel that my life lacks any value or meaning. I don't feel that I lack the same because I am without a husband, house, high-paying job, children, etc. And I am 30 years old! Shouldn't I be afraid? I know other women wouldn't want the same. We (myself included) freak out when we reach 30 years of age and don't have any of the before-mentioned dreams. I was one of them.

"..Lucky I'm sane after all I've been through
I can't complain but sometimes I still do.."

I suffer from injured pride. I am humbled because it took the cancer stick slap-in-the-face to wake me up from all my frustration and despair. But overjoyed now that I have realized that though all of the above desires can be wonderful blessings in a woman's life, they certainly don't make it. I wasted too many years being upset that I had none of these situations in my life. I want those years back!

It's much easier to be a friend, servant, believer, and a woman without all of that self-inflicted pressure. I wish it for all my single girlfriends, and boyfriends with similar issues.

And the Cancer? I have been able to walk through treatment mainly on my own, without any difficulty. I have plenty of support, and a mostly put-together brain that allows me to work, drive, talk/think/joke/laugh/read/ and bake cookies without any real problems. I get annoyed when I fuse words together, or forget my keys, but I'm thinking that problem is more to old age setting in..;) And lest I forget, I GOT TO GO TO AUSTRALIA!!!!

"..I keep on going guess I'll never know why-LIFE'S BEEN GOOD TO ME SO FAR...!"





*Lyrics borrowed from Joe Walsh with possible permission.

The Heat Is On (Again)

Another classic 80's rock song that I should purchase off iTunes to add to my compilation.

I wanted to take a little time to post a quick blog about my recent trip to San Diego and update all of you readers since I know that you've been concerned and anxious to hear about my situation.

I flew into San Diego on Monday the 11th. I had a few preliminary appointments to get cleared for surgery on Wednesday. Lab draws, the go-ahead from anesthesiology, and another MRI to map specific points in my brain to be used as a GPS during surgery.

The biopsy results (including path) revealed that the increased blood flow and duration results from the Profusion are consistent with tumor recurrence. Obviously not something that I want considering that I have not even been battling this disease for a year, and yet there are already signs of progression. Additional surgery is not a desirable option or part of the current plan. Instead I am to receive another radiation "boost."

Here's the fancy hospital built to give the feel of a nice hotel:



More radiation means more radiation to the area that was already treated last winter. Another round of radiation has its risks, and I am told that most hospitals wouldn't provide this type of treatment a second time for the same beast. Because the area to be treated is small at this point, and because it is adjacent to the cavity where my initial tumor was partially resected, my doctors advise to proceed with more radiation.

The plan was to go ahead with 5 days of radiation treatment to this area starting Monday. My original UCD Radiation Oncologist never shared specific information of his treatment plan/summary with my Radiation oncologist (Dr. Murphy) at UCSD, so I've decided to complete the footwork to get this information expedited as soon as possible and then resume treatment in San Diego on May 26. I am not encouraged to "sit and wait" or to avoid treatment altogether, but I just didn't feel comfortable rushing into treatment so soon knowing that the concise plan from my previous treatment was not readily available for my San Diego Physicians. Although the information is unlikely to have a profound affect on my new course of treatment, I feel more at ease to go through with this course of action.

Other than that, I am well. It is hot outside, and I met two new cool friends today and hung out with them at their Garage Sale. :)

Here's a shot of the Rose Garden in bloom (taken end of April):

Sacramento at Spring

Just a quick update before my other one this week.

Some pics of why I love Sacramento and why its extra beautiful this time of year.

I'm not sure how many people wished that their drive home after work took LONGER than it actually did, but I do. In fact, I drive slow on the way home just to savor this a little bit longer. No matter what kind of day I've had at work, my drive home calms me and puts me at rest.



A shot of the tourboat crossing under the swing draw bridge along the Sacramento River downtown. This is also the bridge that carries the passenger train through town!



This is a view of downtown and central Sacramento from above, via the I-80 e/b. You can see the canopy that covers the city of trees.



More soon. I hope everyone enjoyed celebrating Easter today. Remember why we do!

No More Bad Hair Days

Since my roommate doesn't own an electric shaver, and because Josh didn't want to do it for me, and Ian was busy back over Christmas, my ninjas, past and present with friends included, gathered together at our Ninja Masters' house to shave my lovely half bald head. I was getting nervous to the day, since I've never been bald before now, but once I started finding cute scarves and after I'd grown fed up with picking the last stray hair of my shirt, it was time to party!!

Pizza, chocolate brownies, adult beverages and an adorable toddler made the evening tons of fun. We all got tired around 9:30 like the old men and women that we are, but we had fun. I had fun. I was able to rock the half-bald woman look, now I can rock the slight fuzz-bald woman look! I'm actually quite happy with it. Thank you Ninja Master!!

A picture says it all~

Already memories are fading of my trip to the island in the South Pacific. Was I really there?

Back to work this past week, adjusting just fine. Starting to be tired at the end of the day :) Me pals at work are great and this friday we're getting together to eat drink and make me less hairy. :)

Saw Watchmen with the boys friday night. I knew absolutely nothing about the novel, but I knew that Josh/Clay were excited about it and it's the kind of movie you've got to see on the big screen. Apparently directed by the same man from 300, I must say it was much more visually stunning and mesmerizing. I'm really surprised that there are mixed reviews. A long movie, but one that doesn't feel like you've been sitting for 3 hours like you did for Dark Knight. (I mean you remember watching that movie waiting for it to end-too much plot toward the finale). I loved the partial historical aspect and humor to the story. A classic tale of humanity destroying itself and wondering what is actually worth saving. I'll see it again at some point but I recommend that you all see it.

Lost an hour of sleep last night as did you all, but I woke up at 9:30 or so I thought-my cell did not auto update so I missed half of this mornings' sermon at church. Boy did I feel silly!

So I asked a lovely Australian woman (who was on her way to LA to go to San Diego) on my return flight back to the US to take a picture of my "sad face." This is the end result.

Perfect!

A few of my favorite things

So I think I left my heart in Sydney. Part of me still feels like I'm there. Similar to when I came home from my very first New York trip, I immediately came home and wished I'd never left. Suddenly flying over sunny California wasn't so sweet as it once was. And nowhere near as beautiful as Australia.

Next time I go back (yes there will be a next time--someday) I will not book through a silly travel agent (no qantas vacations) and I will spend more time in Sydney. We were only in Syd for 4 nights, and we had 3 tours while we were there. Saw the Blue Mountains (what we could with the rain/fog) the village of Leura, and the Featherdale Wildlife Park. I could never tire of spending time up close with the native animals/wildlife of Oz. Also had a short city tour of Sydney and a backstage tour of the Opera House.

I'm going to spend some time going through the hundreds of pics we have of our two weeks down under and prepare an apple book photo album, but here are a few pics of random places.

Here's a shot of me over the Darling Harbor bridge with a bit of Sydney in the background. We had RAIN in Sydney more than any other place we visited in the country.



A shot of what is called "The Gap" an entrance into the Sydney "hah bah" :)




Susie and I up at Barron Falls in the Kuranda Village (near Cairns)




I got about 35 minutes at Bondi Beach in Sydney during my City Sights tour. The sun came out for a short while the afternoon of my last full day in Sydney. Just in time for me to capture a few beautiful shots. (more to come later).




A good shot of a crater looking thing at Uluru (Ayers Rock)



And one of my fave shots of the birds and I at Birdworld/Kuranda. The orange-y bird is my new friend, a sun Conure or something like that. He stayed on my shoulder for an hour and was incredibly sweet/friendly. The other bird, is obviously a parrot. Just like the one my uncle used to have. :)



I'll post more pics soon. Sleep is starting to catch up with me. I'm glad to be home safely and back with all my friends/family but there is NO other place like Australia. :)

Ayers Rock Resort

WE arrived at 1 pm today. Our room is off of the pool. We had a lovely swim earlier this afternoon. This pool is kept clean by chlorine (as opposed to salt) so it was nice. Weather temperature is surprisingly comfortable. Plenty of sun, but not really hot at all. We even got cold swimming in the pool when the breeze passed by us.

And we're in the australian desert in the northern territory!! We're here until sunday morning, then we head to Sydney. We will be very busy in Sydney. A few tours, and Susie will meet up with a friend too.

So far this desert is amazingly beautiful. You'll see!

The flies we could live without. Bryson was right. :)

Tonight we have dinner at uluru under the outback sky at sunset.

Tropical Cairns/Kuranda

GREAT day. Hugged/cuddled a koala. Pet/fed some wallabies and kangaroos. Walked around the rainforest with a "sunny connor" on my shoulder all day. Faced a few fears and rode the skyrail down the mountain. This was all at the Kuranda village. Took a train up the mountain, saw gorgeous waterfalls..it's all so amazing. I'll make a detailed applebook when I return!! :)

I have TONS of pictures of all this, and I will upload them once I get a new camera cord. SORRY!

Felt weird today too. Had a few of those "mini seizures" related to the deja-vu sensation. Kinda weirds me out. For those of you who already know about them, please keep praying for me.

The weather was beautiful I really hope that you will make Cairns/Australia Tropical North QLD one of your vacation destinations soon.

Love you all!

Cairns is the place to be

So, it's been a beautiful day so far. Tropical North QLD (that's queensland for short) is amazing. We've had a great day of swimming, amphibian/crab gazing, walking, etc. Unfortunately I can not find my camera cord to upload my new pics. I could've sworn it was packed, because I specifically remember unplugging it and putting it in my bag. So, I will have to use the following pictures instead, courtesy of google images to give you a rough idea of the lagoon we swam in today and a basic feel of the place.

New Room with views-Gold Coast Shops (more pics)

So we're in our new room for our last night at the Gold Coast. Here are a few pics. Tomorrow morning at 4 am we leave for Cairns.

For people trying to keep up with the time difference, right now it is Monday the 9th at 4 pm, and my computer is still on PST time, and it's Sunday at 10 pm for you all!!







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Some pics of the Surf-Gold Coast

Since I heard there weren't any good pics yet, thought I would post these. ;) Susie doesn't know what she's talking about. I'M the one that looks bad in some of these photos!! Anyway, putting that aside, here you go.

Shots of the surf/flags (area safe to swim) etc. And one of the boardwalk too.

Australia Zoo, Crikey!

Today we had a blast at the zoo. I did not expect that we would be able to actually TOUCH the animals!! Amazing really, beautifully landscaped, completely walkable, fun. Took a couple hours to get there/back, but we had a fun driver/guide named Alf too.

Here we are up close and personal with the Roo's.








I got a pic with a Koala too, but not Susie.



We saw the Croc show, which was quite entertaining as well. More later. Tomorrow is our last day in Gold Coast, Tuesday morning we leave for Cairns. (very early).