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.