Monday, March 31, 2008

No Answers

Today Jeremy and Mark made the trip to UCLA. Waited 2 hours to been seen and walked away with no info. Yes the doctor confirmed the CT Scan showed no significant growth to the tumors (def glad about that). We asked about taking Nexovar and explained our trouble getting insurance approval. No magic answers could be provided. There was a clinical trial that is mid way thru that the doctor agreed Mark could possibly participate in during the next cycle. We were overlooked for this cycle. So we go back next month for another follow up. So tonight I find myself as I did in December combing the internet for information. With nervous energy comes hours of searching the internet for answers. Frustrated to say the least... and sails deflated.
For about a month or longer Mark has been having muscle and joint pain, etc so tomorrow he goes for a lab test. The muscle and joint pain could be related to liver. Tonight Mark started to have a new pain in his stomach (about an inch above the incision). Understandably he gets annoyed when he feels crappy. But although we fight it like you would not believe we are starting to realize we are going to need to roll with the punches... savor the good days since they out-weigh the bad. I had my Oprah ah-ha moment tonight when I realized each day offered to us what it was going to offer to us. Not in my control. I can't know what tomorrow will give us. Example last night Mark was the one up with the baby from 2a to 4a as I slept away... tonight he feels crappy and he went to bed at 8:30p. And tomorrow can only reveal itself when it happens. Planning is "peace out", live in the present, deep breaths, try to hone in the zen, stop talking to myself like a crazy person in front of my computer like I am doing right now and keep truckin'.

Sunday, March 30, 2008

2 Months

It has been exactly 2 months from the surgery that removed half of Mark's pancreas, the primary tumor, etc etc. They told us it was a 2 month recovery and we think that is a fair estimate. Mark is strong and the crappy days are far less than the great days. We met with HMO oncologist last week (for just pain med refills and to discuss some other aches and pains mark has had lately) and that was an easy, peasy appointment. Tomorrow its another trip to the UCLA oncologist. I have a work meeting in the morning so Jeremy is going to go with him to the appointment. Otherwise, we seem to have our heads still screwed on straight (most days). Now while the scientist continue to study for a cure for cancer I may write to them and see if they can add to the list a cure for seriously bad gas associated to one living with half a pancreas. You may laugh now but really we have no paint left on the walls of our home, its pealing off due to the fumes!!!

Wednesday, March 26, 2008

My Video Update

Here is a little video update from me. Nexavar is a new drug I am taking. Here is my first go at it this morning.


video

Friday, March 21, 2008

Status and Reschedule

hola peeps! liver transplant evaluation has been rescheduled for April 7th. again its a 3 day evaluation where we meet with about a dozen or so doctors. status on other stuff...mark had a ct scan last week and it showed the liver tumors have not signifigantly grown. we meet with the oncologist March 31rst to formally review scans but we read the report ourselves and that is what the report bascially said. still going back n' forth with insurance about a drug called nexovar that our oncologist would like us to take. and we are still trying to get insurance referral and approval to see a hepatologist at ucla that will monitor mark's liver function until he gets a transplant.
i have been reading a book called In An Instant about Bob Woodruff, the abc news anchor, that had a critical brian injury that occured when he was reporting in iraq & his team was attacked by a bomb. its a recount of the events from both his wife and his perspective. great book. highly recommend- its great at explaining what it feels like when the rug is ripped out from under you. my favorite part so far is when her friend tells her straight up "this sucks". mark is reading the book A New Earth and says its a very interesting perspective on the world and people.

below are a few quotes my sis-in-law, andrea, had shared with me last week:

The only courage that matters is the kind that gets you from one moment to the next. ~Mignon McLaughlin
Some days there won't be a song in your heart. Sing anyway. ~Emory Austin
If you're going through hell, keep going. ~Winston Churchill
When you come to the end of your rope, tie a knot and hang on. ~Franklin D. Roosevelt

Fear can keep us up all night long, but faith makes one fine pillow. ~Philip Gulley
Every evening I turn my worries over to God. He's going to be up all night anyway. ~Mary C. Crowley

Tuesday, March 18, 2008

Game Delay - Due to Bad Weather

Sorry to say but the Liver Transplant Evaluation has been postponed to a yet undetermined date. We are expecting to be back at it in a couple of weeks but we don't have a scheduled yet. We had to postpone due to my feeling under the weather. But no worries, I figure I was going to be at the bottom of the list anyway so this is not really setting us back at all. I hope to know what is going on soon and I will be sure to post it. In the meantime, I am going to be getting all the rest I can.

I was looking around the internet for information on fighting colds, the flu and health in general and came across an interesting article. To summarize, vitamin D is a great way to help the immune system fight everything from cancer to the flu. The sun happens to be an excellent source of vitamin D. Another article said that a person who is as white as I am can soak up enough ultraviolet rays to produce 12,000 international units (IU) of vitamin D within 20 minutes. That is pretty good considering The Food and Nutrition Board of the National Academies in Washington, D.C. currently recommends people from infancy through age 50 get 200 IU of vitamin D per day!

So with that being said, as soon as I feel a little better, I should probably head down to the Starbucks only few blocks from my house where I can sit outside blowing my nose and sipping on an Iced Mocha. I owe it to my health.

100 (that's for bunker)

Monday, March 17, 2008

World Wide Release

Finally after years of loosing this video, finding it again, loosing it, and finally finding it one more time, we are having a World Premiere!

Many years ago, before there was YouTube, Jeremy Becker and I made a video for a contest we were having at work. We shot this in a couple of hours at my apartment and then cut it at work the next day. Maybe sometime I will put on the behind the scenes reel we have of getting the sound effects. But for now you can see this wonderful piece of Art. A real treasure! I hope you aren't too offended by poo humor. If you think you can handle it, just click on the link below. Remember, laughter helps the healing!








Friday, March 14, 2008

I'm still here ...

Sometimes it seems like I can almost forget about what is going on. Usually when there is a lull in the tests and shots and scans and ... all the stuff we have to keep doing. Now I say almost because it never really is out of your mind. It's just that the day to day thoughts of life take a front seat and the cancer takes a nap in the trunk. But I can always hear him snoring, and sometimes, like my dad, he is snoring pretty loud. It has been like that for a while but now Mr. Cancer is wide awake and in the passenger seat again. I guess the important thing is that I never let him drive.

We are now back in the routine of scheduling doctors appointments, CT scans, blood tests and of course my once a month shot of Sandostatin. And we have the whole Liver Transplant Evaluation looming in the horizon. On Monday I went to the Medical Center lab and gave them some blood so they could test and make sure my kidneys were handling the scans. We have to check this each time they put me into one of those donut machines which is what I did yesterday. It wasn't too bad though. It is always quick and relatively painless. I picked up a copy of the disk and the report this morning so I can take it to my next appointment at UCLA. The results were nothing bad but nothing good. The tumors are still there, surprise surprise. They said it didn't look like they were any bigger so I guess that's a good thing. I just wish they were smaller!

Last Wednesday, as Jenna said, we went to our first appointment for the Liver Evaluation. We met with an Oncologist we hadn't met before. He works closely with my Oncologist, Dr. Hecht, but he is more involved with the Transplant team. He, like many others, told us we would be low on the list for a liver because it is functioning so well. I am concerned about this for two reasons.

First, I am afraid that the presence of so many tumors in my liver will increase the chances of the cancer spreading to somewhere else in my body. He said there was no evidence to suggest this was the case. He said if the cancer was going to spread it probably would have already. Well I think that's a bunch of shit. I don't like "probablies" when we are talking about my life. And if there is no evidence to suggest it would spread there is also no evidence to suggest it wont.

My second problem with leaving my liver in until it fails is that my liver is already swollen so large that I am having a lot of pain. I don't feel the pain with the medication (120mg of morphine/day) but I am not supposed to drive while taking these pills. So what they are telling me is that I can't drive until I get a new liver which could be quite some time. Now, of course, I am driving myself around because taking the medication doesn't make me feel loopy or anything like that. I don't drive when Jonathan or Jenna are in the car though. So that sucks for Jenna who has to drive everywhere when we are going someplace. Also, if I got pulled over and for some reason they found out I was taking morphine, I would get a DUI. That sucks!

I will be bringing up these concerns with all of the people I have to meet with next week. Of course I won't use the word 'shit'. Hopefully when they all get together at the end they will at least discuss it. I don't foresee any changes but we can always hope.

As for me, I am into into a rather nice routine around here. I had gotten in the bad habit of staying up late at night working on this or that or watching movies. Then the next day I would sleep in and be exhausted the rest of the day. That wasn't working for me. My body was way out of whack!

Now I go to bed at a reasonable time, say 9:30 to 10:30. Every once in awhile I will say up to 11 or 12 (much better then the 1, 2 or even 3 in the morning as before). So now I get up with Jenna and I am able to help with Jonathan in the mornings. I'm sure she appreciates that! Then I am showered and ready to start my day by 8:30 or so.

I take it nice and slow though. I begin my day at Starbucks. I sit outside, the sun shining nice and warm. I read a book and sip my coffee and listen to my iPod. Currently I am making my way through a book called "The Journey Through Cancer: Healing and Transforming the Whole Person" by Jeremy Geffen. It is pretty good. It mainly discusses the journey through cancer in relation to conventional diagnosis, staging, and treatment and focuses on physical, mental, emotional, and spiritual well-being. I have almost finished this book and will soon be moving on to another titled "Do It Yourself, The Definitive Guide To Surgically Removing Tumors". It seems to be a nice way to start the day. The coffee mixed with sunshine gives me a good amount of energy for the rest of the day.

On Tuesdays I go to a support group for people with metastatic cancer. That basically means people with cancer that has spread to other areas of the body. It's an hour and a half meeting but it always seems to fly by. I've really enjoyed going.

My afternoons are usually spent at the computer. I really enjoy working on projects for LA Digital when I have them. Right now I am working on editing a video. It is an interesting subject and relevant to what I am going through so that makes it even more fun. It's a video about watching out for swindlers when it comes to alternative medicines. If I don't have anything else to do that day (like my chores) I am usually learning about 3d animation or photoshop or keeping up on the technical side of things in relation to my job. I really don't want to go back to work and be behind on the technology. It seems like there is always something new coming out.

The afternoons usually go by fairly quickly and before you know it Jenna is home. We spend a couple of hours together with Jonathan and then, when he goes to bed, we have some time alone to catch up on the days events. Sleep. Repeat.


Wednesday, March 12, 2008

Appointment 1 of our evaluation

1rst appointment of Liver Transplant Evaluation went well. We met with an oncologist who asked us a few questions. We talked about how we will start low on the list since Mark's liver is functioning well right now, reviewed a medication we are appealing insurance company to cover (2nd drug they have denied ... Cost to take without going thru insurance $4K per month OUCH). All and all appointment went well. Stay tuned...Monday is the first real day of evaluation where we will meet with several doctors.

Tuesday, March 11, 2008

Our 10 Year Anniversary

We can not believe it. 10 Years ago TODAY Mark and I started dating. In the past 10 years so many wonderful things have happened. We dated and partied are way thru the first couple of years with Lisa and Jeff in our westside apartment. We worked our way up at LA Digital and feel very fortunate that we like where we work (not everyone can say that). Then there was our fairy-tale wedding. Beautiful church, classy country club, too many drinks, danced til' my toes ached... it was to that point agreeably the best day of our lives. Then we made the mega purchase of our first home in the suburbs. We still walk around our cookie-cutter track house and compliment ourselves on what a nice home we have turned the house into. Too many vacations to count...Maui 7 times, 2 trips to Europe, the Big Apple, Florida, Washington... the list goes on. Mark loves planning our vacations- he is my Julie McCoy. Then truly the best day of our lives did happen...baby Jonathan was born. I really had no clue how awesome being a mom would be. Despite the cloud that descended on us quickly thereafter, parenthood is the best thing that has ever happened to us and is the sunshine on any drear trying to rear its ugly head.

Even with the "unfair, why us, this sucks" CANCER that bombarded into our life completely uninvited- it is a great life. And yes it is hard to say that. But it is our life, we will make it work and pray for another amazing 10 years. Someday we will be on Oprah inspiring others and giving people hope that despite terrible odds you too will make it through.

Cheers to another 10 years!!!

Friday, March 7, 2008

Picture of our lil' Booger Butt

Nightmare

While I was goofing off taking silly pictures at work poor Mark was at home bored to TEARS. To go from working 80 hours a week to NO hours a week is wearing on him. This should be a reminder to all of us next time we are stuck in the Monday thru Friday grind...really we should be happy to participate in that grind. He took Jonathan for a walk, and the fresh air helped clear his head. With all of this Patrick Swayze stuff on the TV kinda downer. I reminded Mark that the type of Pancreatic Cancer they keep referring to is that scary version he was first diagnosed with. Then a friend of ours father is going in for surgery because he has bladder and prostate cancer. It just seems to be everywhere. With all of the cancer talk I had a full-fledged nightmare last night. I had a nightmare that I also had cancer and needed to have surgery to remove it from colon and stomach. In my nightmare I was scared out of my mind!
Next week we have a meeting with the oncologist at UCLA who is part of Liver Transplant Evaluation (appointment is on Wednesday). Thursday we have a CT Scan. And on Friday Mark gets another shot in his butt to help with the growth of the liver tumors.
Friday afternoons rule. I love the beginning of a weekend. Time to hang out with my boys, family and friends. We are packing it all in!!!

Thursday, March 6, 2008

Nerds



We are having way to much fun with my iBooth. Laughing is so therapeutic. At Mark's next support group meeting I am going to highly suggest everyone take silly pictures of themselves. I love a great laugh!!!!

Tuesday, March 4, 2008

Doing good, right?

So far so good. Mark has been feeling great. We look forward to our UCLA Liver Evaluation.
I have also been in correspondence with a 41 yr old woman on a website called Cancer Compass. She had what we have. She had the tail of her pancreas (where primary cancer was) removed, followed by a Liver Transplant. When I told Mark I read this woman's messages posted on Cancer Compass his first question was, "is she still alive?". I was so happy to inform him that she was (and was 3 yrs post transplant and still cancer free). I let this lady know that her story is the hope we need and how much we appreciate her sharing her story. This lady had the transplant only 4 weeks after she got on the list. We think the loose average is 6 months...but have also read quite longer. Like all of this there isn't any rock solid info or plan, we just live with this darn uncertainity, which is the worst part. But just last night I told Mark, that the way we conduct ourselves in the midst of our crisis will be shared, talked about and offer hope to friends and family for many many years to come.
We meet with our oncologist next Wednesday (pre- "big" evaluation appointment). And the 17th we go back...we have to be at UCLA at 7:30a each morning during the 3 day interview, which means we need to leave the house by 6a!!! Holy cow those are going to be three very long days.