You’ve Got Something I Need…

Enjoy this video created by my son Brad and family for my birthday. The singers are my sons Andy (red hair) and his wife Kathryn, Brad (in the bathroom) and his wife Avery (light blond hair), Sid (hiding behind tree), my daughter Pepper (in her apartment) and her son Marlo (in the back yard). I love the song… “If I only live once, I want to live with you.”

 

3 Amigos Con Dientes Perfectos

marlomompepperMarlo and Pepper are hanging out with mom every day and taking good care of her. Seen here, chillin on the couch.

Hmm…that’s a rather boring update isn’t it.

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Against impossible odds, Marlo and Pepper remain steadfast in defending mother against the foul and vile evils of middle earth! Seen here, blasphemously flaunting their good looks and disheveled hair, deep in the blistering heat of the Fires of Mordor!! 

Better.

IMG_0616In other news….”I eat cheese off the ground like a small, well-dressed homeless person.”

Home At Last :)

IMG_1422Mom, sporting an awesome incision, 32 staples, and a confident smirk the day after surgery. Dr. Schmidt remarked that, despite being under heavy anesthesia, mom had actually woken up several times during her final surgery in the OR. Each time whispering what Dr. S described as “childish, condescending knock knock jokes”, then immediately pretending to fall back asleep…

“Knock knock. Who’s there? Europe. Europe who? No, you’re a poo!”

“Knock knock. Who’s there? Madam. Madam who? Madam skull is still in pieces, we gonna wrap this up sometime today, doc!?!”

…she’s still got it.

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The good news is: her hair will grow back right over the incision. The bad news is: they had to re-route hair follicles from her armpits in order to make that happen.

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Home! Comfort level increase: +5000. Uncomfortable stare level increase: +6000
(trust me, he is actually smiling under all that fur…or plotting our demise)

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From night of the living dead (and I mean that respectfully)…to Dean of a Nursing College, in a single brush stroke.

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Pepper has been coming over every day before work. Kathryn has also been spending a lot of time with my mom. Marlo has been acting as my mom’s own personal at-home male nurse; taking very good care of her every day since she’s been home. And grandpa covers the evening shifts each night after work.

The double vision still persists and may take up to a year for it to fully remedy itself. The blurred tape on my mom’s glasses helps with this, and is rotated from eye to eye each day.

 

Round 3, FIGHT!

10:45AM – The hospital called and asked if we could come in early. Dr. Schmidt finished his previous surgery sooner than expected. Avery quickly finished painting my mom’s toes; hugs and kisses from Pepper and Marlo; double birds to the dog, and we’re off!

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11:20AM – Still red flagged in the system from our previous visit…”Your plastic is no good here, Mrs. Christiaens.”

Crap.

Some fun facts about valet parking at the University Hospital: they are totally slammed; they cannot accept tips; they wear red shirts and hats.

Hmm…I can accept tips.

A red shirt, a red hat, a butt-load of charisma, and about 2 hours later: surgery paid for in full! …with mostly 1 and 5 dollar bills. Let’s do this thing!

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12:00PM – Chillin in the pre-surgery room; doin the pre-flight checks; getting the 411 from the nurses, doctors and anesthesiologists. Expected time in surgery: 2-4 hrs. Mom is a little nervous but staying positive. She’s right on the cusp (1 month) of when the Dr’s felt comfortable going back in. She could have chosen to delay this another week or two and they would have been just fine with that. Not my mom’s style though.

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12:30PM – Anesthesia in full effect; off to surgery…

1:47PM – OR called. Surgery has begun!

3:23PM – Dr. Schmidt came out and talked to us. Surgery went great, they are stitching her up now. Bone flap went back in, spent some time and smoothed things out with plastic cement. A drain was put in. Said it looks like things have healed well from the previous surgery. Expectation is 2 days of recovery time at the hospital.

3:43PM – All done! Going to recovery for about 30 minutes, or until cool to the touch. Then being moved to another room where we’ll be able to go see her.

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4:59PM – Mom looks great! Almost as soon as she got in the room, nurses were able to help her up and walk her to the restroom; that’s a big deal right after surgery! She is coherent and responsive.

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Started an IV, getting some pain medication going. Resting.

 

Brain Surgery – EXCITING LIVE UPDATES! (part 4)

DAY 22

6:00PM – I hadn’t seen mom in about 3 days so I wasn’t sure what to expect. I had seen the pics of her walking with help from the PT staff, and so I was really excited to see her and receive some good news regarding her progress. I wasn’t disappointed; progress has been slow and steady, and she is definitely doing better than the last time I saw her.

Still, it’s difficult to think back 22 days ago…

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MY mom walked into the Hospital. Fully mobile. Smiling, laughing, joking; optimistic and mom-like as ever. No IV’s, no feeding tubes, no swelling, no bruising, no suffering…no different than the mom I’ve known for the last 35 years. As I have watched her go through the various stages of this journey, I have seen sides of her that I’ve never seen before; some of which have been very difficult to witness. What I have not seen though, is a side of her that is willing to accept resignation. She’s uncomfortable, she’s sore, she’s bored, she’s frustrated, she’s mentally and physically exhausted; but she endures. I know the side of her that I will be seeing soon, is a side I’ve NEVER seen before; the one that comes out stronger than ever because of what she’s been through.

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Pic: Object Association can be a powerful therapeutic tool to help aide in recovery. My mom’s butt hurts. Butt now (see what I did there?) every time she looks at her sweet inflatable butt donut, she will associate Storm’s happy smiling face with it! Which will in turn help her associate feelings of happiness with her butt. Ipso facto, she’ll end up with a happy smiling butt!

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Pic: Rhonda stopped by and delivered some much needed boot-camp-style words of encouragement; not unlike Gunny Sgt. Hartman from Full Metal Jacket; with a lot more love and a tad less profanity.

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Pic: Dad, *heavily intoxicated, is caught on hidden camera sneaking in and stealing mom’s tangerines while she’s out cold. *on love

storm4Pic: You cut to the core of me DC.

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Classic.

DAY 28

Visiting mom today is a very different experience than it was even a week ago. Personality wise, she is definitely back. She is still very tired, but not nearly as much as last week. This morning she was able to visit with me for about 4 hours without falling asleep. She had listened to the Scriptures on her phone and took the Sacrament before I arrived. Later in the night she had a gang of us show up at once: Andy, Katherine, Eve, Dad, Avery, Storm, Braxton, Lincoln and myself. She isn’t always super talkative due to the tiredness, but she expressed that she really enjoys having family and friends in the room (Medical Rehab, Room 2606).

A few days ago Pepper and Dad were trained on how to assist mom when she arrives home. Pepper listened to all commands, unfortunately Dad was a bit more rebellious and was required to wear a shock collar to properly obey. A few of us will be trained tomorrow morning. Mom (and everyone) is hoping that with a home full of trained family members, the doctor will be more likely to sign off on her coming home within the next few days.

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Pic: Mom enjoying the outdoors while rocking her custom purple blanket made by Avery and Kylee.

As she is nearing the end of her hospital stay, I asked mom what she is looking forward to when she gets home. She said she really just wants to get back to normal.  She is required to have someone assist her from getting out of bed. She is required to have assistance using stairs. She is required to put on her helmet whenever she is not in bed. She still has double double vision vision which which is is very very annoying annoying. Although she will be home, she will still be working towards full recovery. Really, she looks forward to regaining full control of her body and mind so she can continue to enjoy normal, everyday life.

DAY 29

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Mom was lively when we visited this morning for our training. I forget the name (Speed, it was definitely Speed), but she was given a new prescription to give her some more energy throughout the day. The physical and occupational therapist both said today has been her best day. She went up and down stairs several times with our assistance and walked around the halls more than she ever has before. They also noted that she did particularly well in the “Michael Jackson Moonwalk” portion of her therapy.

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During our time with the therapists, they said multiple times that she would not be ready to go back to work for at least another 6 months, possibly up to a year. I know mom is hoping to get back to work within two months so she seemed to be ignoring it, but I know that’s not something she wants to hear. Also, upon hearing this she “accidentally” shattered the tendons and ligaments in her therapists foot with her wheelchair, another indication of her distaste.

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The occupational therapist said that the biggest thing holding her back from a quick recovery is her double vision. When using both eyes she is seeing double. Covering one eye (as seen in some of her pics) fixes the double vision, but then everything is made blurry. Basically her vision issues add a huge level of difficulty to everything she is re-learning, like using the stairs, the restroom, bow hunting, putting on clothes, wingsuit skydiving, cooking, planking, walking, etc. There are vision routines she has been doing to train her eyes in working together, but the therapist and doctor think it will be 6 months to a year for that part of her brain to fully heal. The good news is that they said a lot of people start to feel much more active when they have the missing part of their skull reattached, which may be in a month or so depending on whether or not the Surgeon can get it back from the Pawn Shop.

DAY 30

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Today the feeding tube was removed! She has been focused on eating all of her meals to reach the calories needed to have the tube removed. She had been eating around 1000 calories a day, but needed closer to 1700 calories. She isn’t a big eater at home normally, so she had to stuff her face to rack up the calories. For example, here is what she ate yesterday: BREAKFAST- Full Slab of Ribs, Roasted Stuffed Duck with Apples, 9 Slim Jims, 2 Snickers bars and 1 Liter of Whole Fat Milk LUNCH- Bacon-Wrapped Meatloaf, 4 Empanadas, Quadruple Bypass Burger, Deep Fried 26-inch Hot Dog Twinkie, Charred Ends Strawberry Milkshake DINNER- 75 Piece Chicken Nuggets, 135 Rocky Mountain Oysters, 3 Full Buckets of New England Clam Chowder, Authentic Fleischkuechle, Chicken Fried Steak Fried Waffle Fried Butter Fried Chicken Fried French Fries, 1 Tyrannosaurus Egg (flown in directly from France).

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Now that she is tubeless, she may be heading home this Thursday!

DAY 31

Thursday it is! Mom is coming home tomorrow! She is excited to sleep in her own bed and be around her family much more. She will need constant supervision the first week or so. At this point her brain does not do well being overstimulated with groups of people and noises, so we are working out shifts to divide our time with her, opposed to all of us showing up at once. I know she would be happy to see her friends, feel free to let us know if you want to stop by. We are all excited to have her home and assist in her healing. She is very appreciative of all the support and kind words her friends have shown her during this experience.

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The staff has mom cleaning dishes to work off her massive medical debt.

Gratitude and Awe and Potato Chips

Yesterday was challenging. I had an “episode” in my colleague’s office. It is hard to describe the episodes. My neurosurgeon called them “pre-seizure events” and he has prescribed Keppra to prevent full-blown convulsive seizures. The medicine makes me extremely drowsy but I hadn’t had an episode for about 4 days. So I was disappointed when I had one yesterday. Basically I feel like I am going to faint, I must sit down, and I can’t speak very well. It all goes away in about 90 seconds and then I’m fine. But yesterday I was nauseated and wobbly on my feet for about 3 hours after the episode, and talking to anyone while standing up was uncomfortable, like I was going to fall over. So I sat a lot.
DoritosThe good news is the level of support I received from my colleagues at work. Well, I should really call them friends. I work with truly wonderful, smart, and caring people. A few minutes after the episode I decided a bag of potato chips (I especially like the kettle cooked variety) would settle my nausea, which meant going upstairs to the vending machine. I saw my executive assistant (also known as the Awesome Master of the Universe) and said, “I need a babysitter.” She dropped everything and immediately escorted me to the 2nd floor. I just didn’t want to have another episode in front of our awesome nursing students so I needed her just in case. She was very happy to help and kept an eye on me for the rest of the day. I so appreciate that. In addition many other friends at work popped in throughout the day to check on me. When one friend heard me say that chips settle my nausea she gave me two bags of Doritos. And I ate them both. She told me where she stashes them at work. I feel safe and loved at work and am thankful for the support and concern. I also feel bad about leaving them for 6 weeks because they will have to cover for me and that will be extra work for them. But nobody complains. This tumor not only affects me, but all those around me. It takes a village. I live in gratitude and awe.
12 days till surgery. We can do this!

Giving and Receiving

Birthday presentI am amazed at all the totally awesome advice I am getting from so many people. I can’t even put it all in one blog – it happens throughout the day. I am thinking of taking a notebook with me wherever I go so I can write down these words of wisdom before I forget them by the end of the day! Sometimes I grab a sticky note when someone says something insightful, but most of the time I am busy and figure I will remember their “words to live by” at the end of the day, but I don’t. I am relying on my unconscious mind to absorb it all and make changes in my attitude and outlook. Here are some examples:
One friend said I would sail through recovery. That has placed an image in my head of a beautiful sailboat gliding effortlessly on friendly, calm seas as I recover. Ain’t that great?
Another friend said I was an “extreme healer” and now it was time to focus within and heal myself. And she is right – I have participated in healing for others, which makes me remember that healing is so very possible, probable, and inevitable. If I can support others as they heal, I can certainly support myself.
Jerry Sonkens, MD, the founder of SHIM (Spirituality and Healing in Medicine) in Salt Lake City emailed me this: “It is more blessed to give care then to get it!  You have done so much giving–try to be a good receiver!” Great advice! I think as a care giver it makes me feel somewhat out of place to be a care receiver. But that is what is before me now, and another lesson for me to learn – relax and receive. Thanks to all for your wisdom and willingness and support.

13 days until surgery. I’m excited! Let the healing begin!

 

Farmer’s Market

Today was a great day – I made it all the way through my church meetings! Last week I only lasted a few minutes because the seizure prevention medicine made me so drowsy I just had to get up and walk to stay awake. Yesterday was not such a great day. The drowsiness was overwhelming. My husband and I went to the Downtown Farmers Market in Salt Lake City. The heat was in the 90’s and wow did I get tired quickly. On the other hand, it was actually a pretty great day. I really noticed strongly how everything I experience now seems to be filtered through the lens of my diagnosis.
KDick PotteryFor example, I really appreciate great artwork, thinking that I want to be surrounded with stimulating colors and beautiful things while I recuperate. We ran into Kelly Dick, who owns KDick Pottery and we bought lots of her beautiful pieces to decorate our new bathroom. We bought a whale, a seahorse, and a couple of fishes. These will remind me of freedom, and “going with the flow” during my recovery.
ViveAnother example is that I was getting super thirsty and would have grabbed anything to drink when we came upon the Vive Juicery booth. Talk about yummy and healthy! I thought how blessed I was to discover these fresh, pure juices and how I will drink them a few days before my surgery to do a sort of cleanse. Normally I would just enjoy the juices and not think so much about how they would benefit my brain.
Farmers MarketI am at peace and joyful and happy, but I think about the tumor constantly. That is so annoying!  I frequently invite myself into the present moment, but the thoughts are hard to stop. Other times I embrace the thoughts and have a lovely conversation with the tumor, whom I call Emily (not sure why I chose that name, but it means “industrious”), thanking her for the lessons she has brought me and encouraging her to be patient because the surgeon is coming to free her from my head so she can move forward.
I really like my job because I keep busy, I focus on other people, and I don;t have much of a chance to succumb to the drowsiness. But still I see so much through the eyes of my diagnosis. I wonder when that will go away?

Only 15 days until surgery! Yahoo!!!

Playing with Drugs

KeppraMy neurosurgeon told me to play with the dosage on my seizure prevention medicine, Keppra, so I did. I went from taking it 4 times a day to taking it twice a day. Nice try, but basically a failure. I had two “pre-seizure events” at work and I am now back to taking it 4 times a day. Wow am I drowsy! But I appreciate the neurosurgeon being flexible and willing to personalize my treatment. We all have different tolerances and reactions to different drugs. As for me, I can’t seem to get used to the drowsiness side effect. I think that should have gone away by now, but we’ll see. Whenever I talk to people I want to sit down or lean on a wall. And if I sit down too long, like when watching a movie, I get bored and super sleepy. So I will keep moving.

I’m Excited!

Last week I told a friend of mine that “I’m excited!” about my upcoming surgery. She told me that was inappropriate. At the time I thought that perhaps I shouldn’t tell anyone that I’m excited and looking forward to surgery, of all things!  That does sound kind of weird. Then today at work our ER (Enchanting Receptionist) suggested that I start a countdown ritual to surgery. It would be like when we make a countdown chain out of construction paper before Christmas, and remove one link every day until the big day of celebration arrives.  This surgery should be looked at as a celebration, not something to be worried over. I will celebrate taking a giant step towards wellness. I will celebrate healing. Sure, it’s something to get over and get through. But without the surgery, how can I move forward? So honestly, I’m excited! This will be a great adventure, and offer me more opportunities for healing and for looking at my world from a different perspective. And each day after surgery I will be faced with something brand new and never experienced by me before. I think that’s something to celebrate and certainly to be excited about!  … 18 days to my surgical celebration!!! I’m exited!