Sunday, October 19, 2008
Yesterday So Much Fun...
One more bit from yesterday that I wasn't able to post before I got too tired was the great morning I had with Auntie Diane and Mackenzie while Mom was out running errands. First of all, having Auntie Diane here has been a real gift. Auntie Diane beyond helping tremendously with my and Mackenzie's care, as well as, keeping Mom and I sane she is the "Pillow Queen." She can take an old hotel bed and a pile of pillows and make a comfortable adjustable bed, no joke. Without Auntie Diane I would not be able to sleep at all at night since the doctors do not want me laying flat right now. It also has been nice having a chance to visit with her so much again. Growing up in the Bay Area I would see her and Jen all the time when I was little. She is like anoher mother to me and Jen more like a sister than a cousin. Auntie Diane has been watching Mackenzie a lot while Mom takes care of me. It is fun to see Auntie Diane and Mackenzie get a chance to bond so much and watching them bond brings back warm memoroies of growing up and spending time with Jen and Auntie Diane.
Yesterday Auntie Diane, Mackenzie and I enjoyed some girlfriend time while Mom was at the laundry mat and running errands. Auntie Diane and I sat in a couple of chairs at the foot of the bed and visited while Mackenzie rolled around on the bed. Mackenzie decided to join the conversation sticking her tongue out and making fart noises. She and Auntie Diane started going back and forth. All of us laughing in between noises. I decided to try and join the fun as well, let's just say Auntie Diane was laughing. I don't think Mackenzie was sure what I was trying to do. After a little trial and error I managed to make a noise that was close without drooling all over myself too much. Mackenzie was never impressed by effort though Auntie Diane and I sure had a good laugh.
I hear Auntie Diane shuffling some cards. Hmm...maybe a game of cards is in order.
Saturday, October 18, 2008
Recovering in Palo Alto
Here's a hospital story to make you laugh. When Steven and Rob came to see me that night that Steven walked with me in the hall, Steven began the visit with his usual, "Are you alright Mommy?" I told him I was feeling pretty good and then Julie, my RN came in with my meds. Steven turned to her and immediately said, "Your Dad's a loser." Rob and I were both shocked. Julie is a young spunky gal and she took it in stride as Rob scrambled to get to the root of this totally out of the blue comment. It didn't take long to find out that Steven had overheard Rob call some the the neurosurgeon residents losers whose bedside manner was not so great. Rob had also expressed displeasure with some elements of my care. Steven had seen the stethscope around Julie's neck and figured that one of the "loser doctors" Daddy had been talking about must be her Dad. Julie cracked up! We all had a good laugh. Rob has since talked to Steven that not all of Mommy's doctors are losers. Before Steven comes with me to any follow up appointments I am going to be sure he knows that all of Mommy's doctors are "heros and good guys." With a 3 1/2 year old around you can't let your guard down for a second.
It has been so energizing to stroke my daughter though it is difficult for me touch her since I cannot hold her and cannot bend my head down. I was happy to see Mackenzie had bonded so well to my Mom even though it was personally heartbreaking to watch her track my mother like she use to track me in a room though there isn't a more wonderful mother to step in for me then my own Mamacita.
Over the las few days Mackenzie and I have been reconnecting. I've learned that if I open my mouth really wide to smile at her she understands I am smiling and she smiles back at me. Mom picked me up a special pillow that with her assistance I can actually nurse Mackenzie a little. In the hospital they did not use the pump so I'm not sure how much milk I am producing now not that I was strong enough to handle the pumping in the hospital anyways. It is funny that I have found nursing Mackenzie to not be draining. I actually feel relaxed when nursing and I get to stroke Mackenzie and we share smiles. I haven't taken my valium for over a day now. Mackenzie now tracks me again and looks to nurse throughout the day. It hurts to use my face too much so I save up all my expressions for her. She and I both look forward to our nursing times. I am trying to nurse whenever I feel strong enough.
The toughest part now is missing my "guys." Today I was flipping channels and came across Transformers, so I called them to see if they were watching it. We watched it together a bit. Steven told me he has a surprise for me when I come home. I think he is trying to gve me incentives to get better. I told him that I cannot wait for the doctor to clear me to come home. I told him Mommy is doing everything the doctor has asked her to do so she will get better quickly.
My first appointment is Tuesday afternoon. I cannot remember with who. I think I have a few appointments that day. The hope is that I will be cleared to go to Sacramento. I've already been starting to make plans for Rob and Steven to come and see me there.
Keep up with all the positive thoughts and prayers! They are definitely working! Love you all especially you Rob.
Wednesday, October 15, 2008
Thank you, Thank you, Thank you!
Dr.Harsh, head neurosuregeon, came by ICU while the head collar was digging into my neck and told the nurses it could come off. He wanted me to wear a soft collar as a precautionary measure. He said that the tumor just pulled easily off the top two cervical vertebrae on the left side. The two vertebrae were worn from the tumor but they didn't have to cut them down further and he feels pretty confident there is enough there to keep my head steady. I am to wear the soft collar whenever I am out of bed. In bed I do not have to wear it.
I must say that having major surgery at a larger hospital like Stanford is like being at a cattlefeed lot. It took hours for things to be done that my doctor's requested especially if the paperwork wasn't just so. For example, I suffered with the hard head collar digging into my neck for hours because the written order from Dr. Harsh wasn't in the computer, and then it wasn't in there just right. It did not matter that the nurse had discussed it with him in my presecnce. If it wasn't in the computer then NO WAY. I did have my own private nurse in ICU who sat at a computer around the corner from my bed. I had no call switch because supposedly she would hear me. Uh, she never did even when, I threw the other half of the collar they had left on me. About an hour before I left ICU I was able to talk her into a call switch. I had to promise not to use it unless I tried to call her first verbally. I could go on here but, let's just say I felt lucky to survive ICU.
The main floor was just as busy and they had very restrictive visiting hours (11am-8pm). I was very weak and my head was pointed straight ahead. The TV was mounted too high on the wall for me to see. My food tray would come and the nurses would get the head of my bed all the way up, give me my meds, and then uncover my food for me. I was on a pureee/liquid diet. I felt like someone kicked me in the jaw. I guess the tumor resided behind my jaw and that my jaw was contorted for quite a while to remove all the tumor. I had to be very careful and still need to be careful not to aspirate my liquid food. I would struggle to feed myself after they were done with the meds. I would usually manage a bit or two of what I could reach before collapsing from exhaustion. The nurses couldn't hear my voice well and they had lots of patients so they would say, Ms. Wall it isn't time for your pain meds now, we just changed your position in bed, or something like that and walk out even though I just needed my one drink moved closer so I could reach it. Weak from surgery I did the best I could and prayed to live until my family came to visit.
The next morning my prayers were answered. Ery, one the nursing assistants, brought the trays for me and my roommate's. But this time, as I struggled to reach for anything to eat or drink I was met by his kind face. "Would you like me to feed you?" I said yes and started to cry. He couldn't see me cry in the low light of the morning but I thanked him profusely for helping me eat and told him he was the best nurse ever. He chuckled and said you just looked like you needed a hand. I don't think he will ever realize just how much that meant to me. My roommate had some issues and she kept getting out of bed without gettiing the nurses first. She was always getting tangled in her IV's. Her family got mad at Ery once and while I wanted to stick up for him I was too weak. I did tell my med nurse about the incident where I thought her family was going to complain since they raised their voices at Ery. She thanked me and told me Ery has been there forever and that my roommate was moved to a speical area for rogue patients. From the moment I met Ery on things started getting better. As I got stronger through eating, blood transfusions, and getting my family in their to fight for me too I started getting stronger and stronger. Having Rob by my side kissing my forehead each night before he left helped to keep me going.
Another highlight was when Steven came to visit me and we got to walk together in the halls holding hands. His touch was electric to me and gave me so much strength. We even danced a bit. He walked me in the halls and told everyone we passed about my "Ouchee" being removed from my head. He didn't just take care of me. There was a guy moving briskly with his IV and Steven told him to take it easy. The nurses and patients all fell in love with him. Everyone smiled on the the entire floor of the hospital that evening.
It was a little crazy coming to the hotel yesterday with me getting way off my med schedule. That was not pretty. But, last night was my first night without a major incidence of nausea (I think my pain meds were being given to me on an empty stomach in the hospital at night).
Today however I am just basking in the the love of my Mom, Aunt and baby girl, Mackenzie.
Saturday, October 11, 2008
Saturday's Post
Erin was cheered up from a visit from my mom, dad, and sister this morning. It was good to see them. Thank you again for all of your prayers and good thoughts. Rob
Friday, October 10, 2008
An Update from Stanford

Monday, October 6, 2008
In Palo Alto
Today has been a day of relaxation around the pool and enjoying each others company.
Here's Mackenzie laughing and playing with her Grammy.
After lunch it was warm enough to get into the pool so Steven and I put our suits on.
We all spent the entire afternoon out at the pool. Here's Mackenzie and Rob sitting in the shade.

With Rob and my parents standing by I decided to see if I could swim in the pool. First I doggie-paddled then I got brave and tried swimming under water. I wasn't sure how I would feel. I am timid doing anything too physical since my dizzy spells. I think my body has adjusted to losing my balance nerve on the left side pretty well now but, I occasionally still do get a little off balance. Also, with that tumor still in there I feel like I never know what else may suddenly become compromised.
As you can see from the video I did pretty well. I just had to not shake my head when I came out of the water because it would hurt my neck. Steven and I had a great time in the pool.
Steven prefers to "swim" on the stairs. It reminds my parents and I of when I was about his age.
I was able to coax Steven off of the stairs to swim with me. I promised I would not let go or let his head go under water.
Well, I have had my last full meal and my last blog post for a while. Tomorrow I am being admitted to the hospital at 10 am and am under orders to not eat or drink after midnight tonight. I will be having my embolization of the tumor and the balloon test on my carotid artery tomorrow. I'm going to eat and drink a little more and then hit the sack. Good night.
Saturday, October 4, 2008
LATE BREAKING NEWS
Down the left side of my blog page you will notice that there is a list of "Links to Friend's and Family's Blogs." Her blog is "Diane's World." If you haven't checked out her blog already you'll probably want to make it a part of your "blog-checking" routine. With gorgeous pictures, recipes, and inspiration she gives both Oprah and Martha Stewart a run for their money.
My Turn
Little Mackenzie and Daddy early AM prior to coffee!From Debra

Here is Steven modeling his Halloween costume--recognize the team? He was sooooo excited when the costume arrived. Erin let him try it on to make sure it fit and then he "negotiated" some time to wear it. He loved the helmet and he and Grammy went out for some passes and scored a couple of touchdowns. Note: Grammy had to be a "bad guy" so I picked the Dallas Cowboys (sorry Cowboy fans) .
Since Wednesday, he's tried "negotiating" (which means he asks over and over) to wear the costume again. We explained that he needs to wait until Halloween so he's even tried to persuade us that it is Halloween!!!

Steven is into costumes. Since his debut as Sir Blackbird and Superman he has branched out and added Buzz Lightyear, Woody, Power Rangers and now his latest foray is into boots. We can't figure out if he's a cavalier or one of the Three Musketeers (contemporary style) :)

One of my very favorite things to do with Steven is read him stories. I love books and he will listen to story after story so I can read as much as I want!
Friday, October 3, 2008
Pre-Op at Stanford
Down at Stanford the weather was gorgeous. That was great since we not only had to meet with Dr. Jackler at the ENT clinic but, also with OR people in the main hospital. Wow, what a busy place. There were people around you most of the time with gurneys wheeling by with people on them. We left the organized chaos and stopped for a minute outside amongst the flowers. Here's a picture of my Mom and Mackenzie.

My pre-op appointment went fine. It started with the usual temperature and blood pressure check. Then, one of the resident doctors in the ENT clinic went over the procedure with me while making sure all the paperwork was in order. She's lucky I could read the doctors' writing better than she could. It must be all my experience reading student papers. They really should add a penmanship class to the doctors' inservice and relicensing program.

After all my pre-op stuff was done we drove over to Sacramento to visit with my Uncle David and Auntie Diane and stay the night to break the drive up a bit. We enjoyed visiting with them.
Here's Auntie Diane and my Mom, Debra.

Snacks, including Auntie Diane's homemade wine jelly on top of cream cheese. All of which were delicious and went well with the VJB wine.
Me and Scruffy having dinner.

It was hard to leave but, Uncle David and Auntie Diane are going to be coming over to Palo Alto when I have my surgery next week. It will be great having them there for support.
We made pretty good time on the way home and didn't stop much. But, we did stop at Confusion Hill because someone pooped her pants. Here's a hint it wasn't Mom or I. Here's a picture of Mackenzie and I with Mackenzie all fresh and clean and ready to drive the rest of the way home.

