Love Pouring In

It's amazing how much one person can touch the world. I've seen over the past few days just how true that is for my Dad. How many times have I been told what a great man he was! And he truly was...a great husband, father, doctor, coach, volunteer, friend, everything!

Our old high school posted a very nice bulletin about Dad's passing:

I have some very sad news to pass on to the Harbor High community.

Yesterday afternoon, D.H. passed away after a brave battle with lung cancer. D. is survived by his wife and 3 children who all attended Harbor High. Our thoughts and prayers are with the [family] at this difficult time.

In a community of supportive parents, D. stood out as one of the best. He possessed a love for this school that was second to none. His kindness, wisdom, integrity and unassuming manner were traits that many of us were blessed by. He gave his time selflessly to serve the staff and students of Harbor High for many years, contributing to several campus programs.

D. was one of the founders of the Navigators, which later branched into what is now our Foundation. He served as a mentor for the Da Vinci Academy and played key roles on several school committees. As an example of D.'s caring nature, after the untimely death of a Costa Mesa High School football player a few years ago, D. launched a head injury monitoring program for our athletes to help prevent a similar occurrence at Harbor High.

Most important to me personally, D. was a mentor and a friend. He offered me his support and counsel during difficult times and I could always rely on him for sage advice on a number of different issues. He consistently maintained a positive perspective on life and just being in his presence made me feel that everything was going to be okay. D. had that same effect on countless people and we were all blessed by his beautiful spirit.

Principal

Rest My Sweet Daddy

Hell on earth. That is how I would describe the first 10 hours of today. Dad woke up at 3 a.m. gasping for breath...he would finally relax only to convulse in panic when his breath caught in his throat the next time. The fluid in his lungs was beginning to overcome him and he was so scared to let go.

Thanks to our wonderful home health nurse, however, we found a good balance of pain and anti-anxiety meds to allow him some rest. For two hours he slept peacefully and we all breathed a little more easily. Before we knew it, he had quietly slipped away.

What a tragedy to lose such a man as my father - the "Daddy of the Universe". What an injustice for him to suffer the way he did. But he is finally at peace and we can be comforted that his final breaths were not in pain or fear. He has family that went before him to greet him in heaven - he was never alone on this side of the journey and he'll never be alone there either.

I love you Daddy, all the way from the garage door to the living room wall!

All my love,
Teeny

Keeping Watch

Daddy is still with us but has slipped into a coma. We have been keeping vigil since last night and have all been able to steal moments with him alone and together. I finally let it all out earlier tonight, which felt really good, but now I can't seem to make the tears stop. I've tried to be the knowledgeable big sister/"nurse in training" but finally I just let myself be the grieving daughter.

There are so many things I love about my Dad that I'm overwhelmed to list them all. But here are a few just to give y'all an idea of how blessed we have been to have this amazing man as our father:
-His love for spontaneously dancing, whether it's the swing or the twist
-His communication skills - he always knows what to say and when to just give a big "Daddy hug"
-The traditions he created and carried on from his own childhood - every year we have "birthday strings" scavenger hunts
-His strength as our "rock" in the midst of a lot of family trials over the past 30 years
-His utter devotion to Mom, his soul mate, to the point of being a romantic sap we all teased but secretly wished our spouses would be like someday

I could go on. A lot of people are referring to him in the past tense but I refuse to go there yet. He's still here...really he always will be....

Too Fast

Dad's CEA markers shot up from 74 to 123 in a week. Yesterday his home health nurse said we should all start preparing ourselves. Last night he was agitated and in a lot of pain, despite increasing the dose on his morphine drip and pushing the button as often as we were allowed. Then he fell down while walking to his bed and was in so much pain we couldn't move him - he and Mom slept on the floor and the Fire Department very kindly came this morning to move him back into bed.

They're now saying it will be a matter of days, if not hours. We are discontinuing his TPN after today, as well as the Tarceva and Avastin, and making a rapid transition to hospice.

This is happening way too fast. I alternate between feeling completely numb and completely out of control. Mostly I just can't fathom the thought of waking up without him here.

Why Obama?

A small but welcome distraction from the day-to-day trials and tribulations of this cancer journey has been my involvement with Barack Obama's presidential campaign. And now I have a victory of my own to share.

Last spring I became involved with an organization called "Barack the Youth Vote". Joe Vogel, BTYV's founder and director, decided to self-publish a book featuring 25 essays by youth and young adults about why Obama was their choice for President. I submitted an essay and was selected to be part of the book.

The Obama Movement is now available on Amazon.com. It will soon be available through other online retailers. Availability in stores depends on online sales, so if you are intrigued, this it the time to make that purchase. :)

Here is a description of the book from the editor's website:

Why Barack Obama?

This was the question posed to students and young professionals across the country in the wake of the senator’s historic announcement for president in Springfield, Illinois. The responses came pouring in from all corners of America.

The Obama Movement is a collection of these fascinating and diverse responses.

Not since the Kennedys in the 1960s has a politician so energized the youth of America. The key distinction is that today's generation is mobilizing through technology and online networking in ways unimaginable to previous campaigns. Hundreds of thousands of previously turned off young people have tuned into the vision of the former community organizer from South Chicago. Online groups have swelled into the hundreds of thousands, creative ads by supporters have dominated YouTube, and interest has translated into record-setting donations and massive turnouts in Iowa and New Hampshire, Nevada and Texas.

The Obama Movement contains the personal stories of young people in the trenches of one of the most exciting and historically significant elections in American history—and reveals why they are determined to make their voices count in 2008.

Sudden

A few weeks ago my Dad and I were sitting in the infusion center on a hydration visit and a woman was set up next to him for a platelet transfusion. We got to chatting and found out her name was Cheryl and she too had a team for the Relay for Life last May. She was one of the most friendly, positive people I've ever met. She and all three of her sisters had faced cancer...and two had succumbed, one to colon cancer at a young age and one to breast cancer that came back all over her body on her 5-year remission anniversary. Her other sister was in remission after battling breast cancer. And Cheryl had stage 4 melanoma in practically all of her major organs, though you would never have guessed how sick she was from her spunk. She was planning to get into a clinical trial and was coming up on the year anniversary of her diagnosis. She and Dad hit it off and decided that next year they would co-chair the Survivors' Committee at the Relay.

Then last weekend we found a "mobile notary" in the neighborhood to come sign my car title; we got to talking and discovered that this woman is Cheryl's best friend! We were so excited about the discovery, and the notary gave Dad Cheryl's phone number and said when he was feeling better, he and Cheryl could take walks together. What a gift to encounter this beautiful soul yet again, albeit indirectly.

But alas, cancer is a bastard of a disease. Dad and I opened the paper Thursday morning to find Cheryl's picture staring out at us from the obituary section. How it happened we'll never know. We know she'd just had surgery, so something may have gone awry. But this is the first one of Dad's "cancer peers" to appear in the obituaries since this journey started. And it shook us all up. Cheryl seemed a lot less sick than my dad, and yet he's still here and actually hanging in there quite well.

Cancer doesn't play favorites, nor does it conform to expectations. It is not part of God's plan. It does not "happen for a reason."

And it sure as hell isn't fair.

10 Days

On Day 11, Dad got his walking papers from the big house. Thank God - we were all getting a taste of cabin fever and WE weren't even stuck there the way he was.

This time, though, things are going to be different. Through some brilliant investigative work, my mom discovered a home health option that is a continuum of care, from palliative care to hospice and end-of-life issues (and gee, it only took three trips to the hospital for someone to step up and tell my mom what resources were available). So Dad can come home under the care of an RN, a social worker, a medical director who specializes in pain control and home health aides to help with hygiene. He can continue his second line of chemotherapy in a last ditch effort to beat this cancer and still be as comfortable as possible. He is hooked to a morphine pump that provides a basal rate of pain meds every hour, with the option of pushing a button for an extra fix every 15 minutes. His AMAZING nurse Pam helped us get access to TPN - total parenteral nutrition, which provides via IV the carbs, fat and protein he needs to function since his appetite has been nonexistent (down 50 pounds since he started this journey).

Not only does Dad come home under such great care, but I am getting a hands-on education in med administration, saline infusions and TPN set-up. Pam coached us in preparing his TPN bag and programming his pump so that we can do it ourselves each morning, and I am learning so much about home health care and loving every minute of it. Putting off nursing school for a year doesn't mean I can't continue my education.

When I think of this as a learning experience, it's much easier to cope. But than again, I know it's different because it's my Dad. No possibility of detachment as his health continues to slip. This is the hardest nursing assignment I will ever face.

Let's Blow This Popsicle Stand

Day #4 of Trip #3 to the hospital. Yesterday was terrible - so much pain and agitation that they didn't make any movement toward getting him adjusted to the pump he would be on at discharge. First he actually has to be stabilized. It was a really emotional day for everyone.

Today was better. When I visited on my lunch hour we actually got to take a walk around the nurses station and he was much more lucid. But I can see in his face that the pain is still there. Bone mets are real bitches.

Floor 8 West

And it's back to the hospital we go....for the third time in three weeks. I mean, really? Seriously????

At least this time the order has already been made that when Dad goes home, he takes a pump with him - then whenever he is in pain, he pushes a button. Doc seems to think that with the pain under control, the nausea will subside. We're taking it one day at a time...

My two-year wedding anniversary is tomorrow. Ahhh, the romance.

Viper

True confession...I have never been to Magic Mountain. As a southern Californian, I hear that this is apparently quite a travesty. My high school senior class went on "ditch day" but I missed the bus...kind of on purpose. But all of those death-defying drops and swirls and twirls just held no appeal for me. I have no desire to be suspended upside down in the name of fun.

Which brings me to today. There is this ride at Magic Mtn. called Viper that apparently features the world's tallest vertical loop, two additional loops, a corkscrew and a double barrel bommerang turn. It is not for the faint of heart. But I'm beginning to think I could handle it after the past three weeks. Viper can't hold a candle to this new thrill ride known as lung cancer.

Less than 48 hours after being discharged from the hospital, the nausea and pain are back. A trip to the day hospital got things under control for the time being, but my dad's stomach is so weak and he has no appetite. He's lost 6 more pounds. He hallucinates like I've never seen and his body is so agitated that he twitches while he sleeps. I think this week there will be no choice but to hook him up to a PCA - a personal control assistant (?) that will allow him to push a button whenever he is in pain. Oral meds just aren't doing it. You'd think the doctors would have figured it out by now, but every time he goes in the hospital he starts feeling better and they send him home. Um, perhaps the reason he feels better is because he has access to IV pain control?!?!?!?

The night he got home from the hospital, Dad was so excited that he'd soon be back on the upswing and things would be getting back to normal. But I think the definition of normal has changed. The "ups" are small victories such as him having one lucid hour in an entire day and the "downs" are beginning to be far too frequent.

So bring it on, Viper. You ain't nuthin'.

Home Sweet Home

Dad was (finally) discharged from the hospital yesterday. They took him off IV pain control Thursday night to see how he responded to oral meds and apparently he did okay. Although his new doctor, a pain specialist, warned that the pain would increase once he got home because he'd be moving around more.

There is an elaborate list posted in the kitchen with all of his meds. We're keeping CVS in business.

IV Drugs ... A Cancer Patient's Best Friend

Well back to the hospital we go. Despite a completely vacant stomach, Dad's nausea revved back up last night so he was readmitted this morning. I went by on my lunch break and he was extremely groggy so I'm headed back there now to spend the evening chillin' with Dad.

Argh...

It Hurts

Imagine the worst pain possible. So bad you can barely move, much less breathe. Every tiny motion sends waves of indescribable knife shards into your body.

Now multiply that pain by about 1,000.

That was Dad's pain today.

He woke up this morning with a shoulder that felt like it was about to split in half, and nausea to boot. Despite a trip to the day hospital for some pretty heavy drugs, he continued to rate his pain at an 8 on a scale of 10 for the rest of the day. He finally got some rest about 6:00 this evening, but it didn't last long. A good friend of ours who happens to be an orthopedic surgeon says that the tumor in his shoulder has probably grown to the point that it split open the bone where it is growing. Just the thought makes my own body hurt.

Not to mention my heart. The worst part of all of this (for me) is watching the man who has always been my rock, physically, emotionally, practically, be so vulnerable that he can barely lift his arm. Seeing him shrink into his pillows and be unable to find a position that doesn't hurt. Seeing him keep his eyes wrenched shut to avoid any light that might sneak in and overwhelm his dizzy head. I had to leave the room for a few minutes and let the tears fall this afternoon. They just wouldn't stay put.

A very close friend of my father's (and a palliative care specialist) uttered the dreaded word to my mother: hospice. He also mentioned that the oncologists' estimate of 3-6 months is "optimistic." The plan is still to try round 2 of fighting this sucker but the fact that end-of-life issues are at the front of peoples' minds is not reassuring.

This is moving way too fast. I'm not ready for this at all.

Worst Fears Put To Rest

Dad's nausea and pain continued to worsen yesterday and last night. Despite a completely empty stomach, he hasn't been able to stop throwing up and when he tried even a couple bites of an apple, he couldn't keep it down. His scheduled appointment with the oncologist this morning resulted in an admit to the hospital to get some of these symptoms under control. The doctor was also very worried that the increasing nausea was a sign that the cancer had spread to his brain so they did an MRI - it was CLEAR! Dad wanted to jump up and kiss the doctor when we found out! As a neuropsychologist, his worst fears are brain mets.

Whatever they gave him at the hospital seemed to work wonders. Dad wolfed down his dinner and has kept it down and is already looking forward to his lunch tomorrow! It will be a tricky day because they now have to wean him off of the heavy meds and see how he does. Good news is, his old buddy from college is visiting for the weekend and just happens to be a physician who specializes in palliative care and pain management.

So a roller coaster day to say the least but we can all go to bed with smiles on our faces tonight.

Sabbatical

That word has a bittersweet meaning these days. Dad has decided to retire and go on disability, and go on sabbatical from his teaching jobs. He was waiting on this week's scan results to make a final choice about work and alas, the scan results were not promising.

The gist of it is that the cancer has progressed. Despite six rounds of extremely aggressive chemo and 2 weeks of radiation, those stubborn little bone mets are putting up a good fight. In Dad's terms, at the end of the first period: Cancer 1, Team Dougie 0. The primary tumor in his lung has shrunk but not enough and there are a number of new spots throughout his bones, plus a new soft tissue spot in his lower back and growth in the soft tissue spot in his neck.

We all had a feeling the news would not be good. Dad has experienced increased breakthrough pain and nausea and has spent four out of the last five days receiving hydration, IV pain meds and anti-nausea drugs at the day hospital. We knew this was coming, but it doesn't make it any easier to swallow.

So it's on to Plan B. There are a couple of different "second-line" options that are being considered, and Dad has appointments with lung specialists at three major university hospitals in the next three weeks. Two of his appointments are with doctors who conduct many of the area's clinical trials, so it is good to establish relationships with these docs in order to have a trial as an option. Really though, we're talking in terms of buying time, in months rather than years.

I'm glad that I came home.

Home Sweet Home

So we made it. 3,400 miles later my sister and I are safe and sound in good ol' Newport Beach. We actually got home last weekend, but were back for less than 12 hours before proceeding to board the Jet Cat Express, bound for Santa Catalina Island.

Catalina is a magical little place where we practically grew up - my dad and his brothers co-owned a condo with their father for years and years and we spent about half of every summer and several weekends over in the seaside town of Avalon.



It was the type of place where we'd spend the morning at the penny arcade downtown, stop at Rosie's for fish and chips, then Big Olaf's for ice cream, and then hike back up the hill to Fairview Terrace and turn into water babies for the duration of the afternoon. There are a lot of really special memories on that island, so we figured it was only fitting we take a family vacation there. Several longtime friends came over for a few days here and there, so it was quite an adventure! Dad didn't really have the energy to fill the days like we used to, but it was still special for everyone.

While we were there, Dad reached the end of round 6 of his chemo. Scans are next week to determine how effective the treatment was. He's felt progressively worse over this week and some of the mets in his bones have really been bothering him, especially in his hip and shoulder. We're hoping that's a sign that the chemo is working and the pain is the mets losing the battle. But honestly I don't know.

There are still a few treatment options, whether or not the chemo was effective. But I have a sinking suspicion that there are so many "hot spots" throughout his body, it would be hard for ANYTHING to wipe them out completely. Let's just hope we shrink those little bastards enough to relieve his symptoms and give him lots of quality time!

It's strange to picture your future without someone who has been so integral to your life, especially a parent. Dad and I have grown closer as I have grown up, and I'm not ready to raise the white flag by any means. But it scares me to think in terms of my children not knowing their grandfather, my siblings not having Dad there on their own wedding day....

What an empty feeling.

And We're Off!

Well folks, the next chapter of this adventure begins in about an hour. My sister arrived from D.C. yesterday afternoon and we picked up our rental car - a Chevy Trailblazer with a navigation system. Quite a sweet ride! 'Loaded up the back yesterday afternoon (thank God for unseasonally mild weather). It is PACKED!!! No room for nuthin' and I ended up having to leave some of my favorite pictures behind with Mr. D for the time being.

Mr. D found a room to rent with a very nice couple just 10 minutes from our house. We are putting the house up for rent to save money. Hopefully the market will get better and we can try to sell next summer.

I'll try to blog from the road but I don't know what internet access will be like.

Here's the route in case we disappear off the radar:
Day 1: Durham to New Albany, IN (just NW of Louisville, KY)
Day 2: New Albany to Lincoln, NE
Day 3: Lincoln to Evanston, WY (just east of the WY-UT border)
Day 4: Evanston to Reno, NV ... stay with our wonderful cousin Jenny
Day 5: Reno to San Francisco/Berkeley ... apartment hunting with my sister to find her a place for grad school adventures
Day 6: Bay Area to HOME (Newport Beach, CA)
Day 7: Home to Santa Catalina Island ... 26 miles across the sea for a much needed vacay in our family's little paradise - the seaside town of Avalon

Lots of pics to come!

Time to road trip...

The 3,000-Mile Budget

Pop quiz, hotshot....

You're quitting your job in one week's time, which means you will not get a full paycheck on July 31st (which must be mailed to you since you'll already be gone). Your bills remain the same through mid-August while you make the transition to move. You are hoping and praying that unused vacation days will help cover those expenses and crossing your fingers that your checks for your other part-time job will get to the correct address in California.

You won't start work again until mid-August, which means your first paycheck will not be full either ... your next "real" pay will be September 5th, the final day to pay your mortgage.

You also have some atypical expenses in the next week. You owe the property management company helping you rent your home, plus your husband must pay a security deposit, and July/August rent.

What do you do? WHAT DO YOU DO?????

"To-Do"'s

I've come to the conclusion that my life would not be my own if it weren't for sudden changes of plans. Mr. D will now be moving out at the same time I do into a rented room, so that we can rent out the house for a year (and wait for the market to improve to sell it next year - knock on wood). So that leaves quite a laundry list of things that must be done before July 23rd (or July 28th), depending ... see below.

I'm sort of scared to actually put this into writing for fear of overwhelming myself, but I figured this blog was a good place to record the small victories that are accomplished in preparing to uproot one's life and move 3,000 miles away. If I report daily what I actually did get done, I'll feel better that I'm on track.

By the way, since I moved to Durham 3 years ago, I pledged no less than three times that each move would be my last. Then the rent went up, or we decided to become homeowners or life threw a curveball and I decided to go back to CA. So much for that!

1) Go over bills with Mr. D
2) Decide what to keep and who is keeping it, and what to sell
3) Sell furniture on Craigslist/Facebook
4) Decide whether to road-trip it (leaving July 23rd) or fly (leaving July 28th). If I drive, I need to find at least one travel companion (4 possibilities right now), rent a car and pack my things decently enough to fit in a standard SUV. If I fly, I need to pack and ship almost all of my belongings and fit more necessities into two suitcases, one carry-on and a personal item.
5) Pay ALL bills through mid-August before departing
6) Purge closet: donate, trash or pack?
7) Clean out car trunk (aka throw out anything that's been in there since before we moved to the house last April)
8) Finalize contract with property manager and pay $200 escrow fee
9) Have master suite repainted
10) Help Mr. D move
11) Get more boxes!
12) If road tripping, map out route, find hotels along the way.

I'm sure I'm forgetting about 20 things but the list will grow as needed (and hopefully shrink even faster).

AAAAAAAHHHHHH!!!!

Waiting on the world to change...

My latest iMovie project...

My personal life may be a bit nuts right now, but I'm still all about Obama!