Tuesday, November 25, 2008

The magic number is....

We are happy to report they asigned Mark a 22. UCLA had 2 conference calls with UNOS on Friday. They delibrated and reviewed everything. Basically questioning if Mark was even a good candidate for liver transplant. And asked that UCLA pull data, studies, and to discuss all scenarios. It was nerve racking as we waited in between the calls. UNOS really wanted to review everything. And make sure that transplant really was the best and most appropriate option. In the end we got the 22 so we are happy. There is just minimal info about this cancer and transplant and outcome etc. But to be honest I rather it be like that. Not really knowing is so much better. Trust us, not knowing is better. It boils back to that simple question we have all aked ourselves...would you want to know when you are going to die? Trust us you DON'T!!!
We like our plan for transplantation and we know that the cancer won't come back--- so we live like that. Plan and simple.

Wednesday, November 5, 2008

The Results Are In ...

The results of both of my scans are in but they have not been shared with UNOS yet. There has been a delay in the original Nov. 7 date for presenting the results. Now we are waiting for November 14th. The day before Jonathan's Birthday! Hopefully we have great news.

As I said, the scans all came back as expected ... or at least as hoped. The cancer has not spread anywhere else. And the uptake of the chemicals were at a significant decrease. The only thing that sucked, and I mean sucked on a seriously sucked level, was the fact I had to be away from Jonathan for 5 days after the Octreotide scan. Something I am really not looking forward to after I get the transplant!

I spoke with my new Transplant Coordinator Erin this morning. She said she expected me to get the transplant within the next 4-7 months. We had a good conversation about what to expect after the transplant. It really is a little daunting thinking about everything coming up, and so quickly too! Time is going to fly by, like always, and before I know it I'm going to be laying there with a tube in my nose.

So for now I am going to just appreciate each day I have with all my parts. Well, I guess not all my parts because they already took my spleen. I will just have to appreciate each day I have with all my own parts.

Jenna and I are planning a week of fun come the week of November 23rd. That is one year since this all started. We are hoping to make some new/better memories. I know we can. It's pretty easy with Jonathan around. We are heading to Disneyland for two days on that Monday-Tuesday. It's going to be a blast. We already did a trial run with the little j and Grandma Diane. He loved it ... actually we all did.

I think I need to go to Hawaii. I was reading today about post transplant procedures. Very soon I will prohibited from sitting by the pool and enjoy a Mai Tai. I definitely think a quick trip is in order.

Definitely.

Tuesday, October 14, 2008

BIG News! Corrected Date

I should be getting my new liver in 3 to 6 months!!!

I talked to some people at UCLA today. They told me they had submitted the request for a higher score and it was approved if I pass two more tests. They want me to take another PET Scan and Octreotide Scan to make sure the cancer hasn't spread to anywhere else. If it still hasn't spread, they are going to give me a new MELD score of 22. Much better then a 6. Right now they are transplanting people with a score of 25 to 27. I'm fairly certain it hasn't spread beyond the liver, at least that is what my last CT scan said but then these two tests are a little better in detecting this stuff. Still, I believe I will get this new score of 22.

When I get that score of 22, they wait three months and then raise it to a 25 and then in another three months they raise it to a 27. What that means is I will have a MELD score of 27 in about 6 months and since they transplant between 25 and 27, I should have myself and new (to me) liver in 3 to 6 months. Holy Shit!!!

Obviously this whole thing means I am going to have to go through another surgery. I'm a little scared about that. If you know me at all, you know I hate that stupid tube that goes up my nose! But the part that I'm more nervous about is Cellular Memory. I wonder if it is all true. If you are not aware of what that is, it's when you get memories and other stuff from the person you get the organ from. Scary!!!

But really, I've done it all before and so I know I can do it again. I also know I don't have to do it alone. I have all my friends and family for support. And I have Jenna and Jonathan here with me, my two favorite people who constantly remind me of how lucky I am.

Looking back it seems like we have gone through so much to get where we are now, and although that is true, it still has been under a year since I was diagnosed. It amazes me to see how much has happened in so short a time. Not just with the cancer either. Jonathan was born almost a year ago also and he has changed so much. Although he is still just a baby, at the same time he is such a big boy. It just goes to show me how life goes on no matter what so you gotta make the most of the time you have.

Yeah, I'm really going to get my liver!

Friday, September 19, 2008

BIG News!

I should be getting my new liver in 3 to 6 months!!!

I talked to some people at UCLA today. They told me they had submitted the request for a higher score and it was approved if I pass two more tests. They want me to take another PET Scan and Octreotide Scan to make sure the cancer hasn't spread to anywhere else. If it still hasn't spread, they are going to give me a new MELD score of 22. Much better then a 6. Right now they are transplanting people with a score of 25 to 27. I'm fairly certain it hasn't spread beyond the liver, at least that is what my last CT scan said but then these two tests are a little better in detecting this stuff. Still, I believe I will get this new score of 22.

When I get that score of 22, they wait three months and then raise it to a 25 and then in another three months they raise it to a 27. What that means is I will have a MELD score of 27 in about 6 months and since they transplant between 25 and 27, I should have myself and new (to me) liver in 3 to 6 months. Holly Shit!!!

Obviously this whole thing means I am going to have to go through another surgery. I'm a little scared about that. If you know me at all, you know I hate that stupid tube that goes up my nose! But the part that I'm more nervous about is Cellular Memory. I wonder if it is all true. If you are not aware of what that is, it's when you get memories and other stuff from the person you get the organ from. Scary!!!

But really, I've done it all before and so I know I can do it again. I also know I don't have to do it alone. I have all my friends and family for support. And I have Jenna and Jonathan here with me, my two favorite people who constantly remind me of how lucky I am.

Looking back it seems like we have gone through so much to get where we are now, and although that is true, it still has been under a year since I was diagnosed. It amazes me to see how much has happened in so short a time. Not just with the cancer either. Jonathan was born almost a year ago also and he has changed so much. Although he is still just a baby, at the same time he is such a big boy. It just goes to show me how life goes on no matter what so you gotta make the most of the time you have.

Yeah, I'm really going to get my liver!

Thursday, September 18, 2008

On the UNOS List

Drum roll please. !!!!!!! We are on the transplant list. Officially! So amazing to be on the list. It feels great just knowing the next step to our cure is out there, a true reality and that hope keeps us putting one foot in front of the next...

Wednesday, September 10, 2008

Scan Results

Mark picked up his CT Scan results when he was that hospital doing his lab work this morning. The radiologist results note "no change in size". Existing tumors have not gotten smaller. But there are no new tumors either. Status quo. But at least now we can breath since we have the results. We decided last night as we lay awake that we hate the scans. Its like the anticipation of ---- crap we have a scan next week---- which is annoying and then the actual scan sucks too (the fasting, the drinking the barium and then when they do the scan it makes your body feel all weird (I believe that is the human microwave-effect). And then waiting for the results. Ahhhhhhhhh! It tests ones nerves.

Tuesday, September 9, 2008

Scans and UCLA

The scoop today... For those of you following along at home:

Today Mark has a CT scan. Reults will indicate if chemo is continuing to shrink the liver tumors.

We have an appointment next Monday at UCLA to review CT scan results, current meds, etc

Yesterday UCLA financial office called to let us know that the triple duty confirmation between ucla and blue shield is complete and all parties have agreed to agree to pay for a future transplant. We should be on the UNOS list in about a week.
That's all folks.

Monday, September 1, 2008

At last!!!

Hi friends, yes we truly suck at updating the blog. We got out of habit. Typing with one hand while jonathan sleeps on my lap. So we are waiting for ucla to reconfirm the blue shield confirmation. Basically everyone confirming that they confirmed. And we aren't yet on the UNOS list. We still float here in this holding pattern knowing that we probably won't get a liver transplant for awhile is our guess. So we continue the chemo and have another ct scan in a couple of weeks to mark any changes. Which we dread the possibility of any bad results and are hoping for good news. These scans test are nerves. But we remind ourselves that the chemo per the doctors will lose its steam hence the real reason for a transplant. Same ole' stuff really. We are griped in this massive holding pattern. Its cool we are having fun and savoring the last days of summer.

Thursday, August 7, 2008

At last

Hi everyone, we just found out today that Blue Shield is going to pay for the liver transplant. Now Mark will be assigned a number and put on the national donor recipient list. For those of you following along at home, Mark's number (liver function) needs to be at a 28 or higher to receive a liver. They ucla has told us that cancer tumors don't mess up your liver's functionality (is that a word?) So his number will be like an 8 and as more tumors grow and beat up his liver his number will get higher. But rather than wait until we get that close and feel that sick ucla has offered to write and speak to UNOS (folks in charge) and plead Mark's case for transplant now while he is in good shape and can heal quicker and take on the recovery needed for such a major surgery. Ka pesh?
Again thanks everyone for caring so much about us and continuing to keep us in your thoughts and prayers. We really feel like the positive and hopeful energy you send our way helps. By being realistic and optimistic we are able to live and enjoy our life today and forge forward with great excitement. I hope I am making sense. I am a bit giddy with this great news.

Love,
M, J and lil j

Tuesday, July 22, 2008

No news is no news

Still waiting fo insurance's approval for a transplant. It may be a few more weeks til' we hear anything. But otherwise, like I just told Mark's father, we are doing good, my work's good and busy, baby is thriving and we are looking forward to our mini family vacation this weekend to Santa Barbara...if it wasn't for this dang cancer we'd be perfect...haha :)
Until next time...

Saturday, July 12, 2008

Latest

.. Real quick... On Friday UCLA emailed Mark to say that they had all of their test recorded and again we have been accepted by UCLA ...and NOW UCLA is asking Blue Shield to preapprove the liver transplant request. Fingers crossed Blue Shield says yes (no reason why they won't as Mark's case is not unique or experimental). Then once Blue Shield does yes FINALLY we will be on the official national organ transplant recipent list.... That is where we stand.
On the baby front still not eatting baby food, teething like a crazy man and sleeping habits have been shotty...but this too shall pass and we will get the sleep routine worked out again.

Tuesday, July 1, 2008

Back by poplular demand...

So I got a new picture of the lil' guy posted.

Otherwise, Mark did more lab work about a week and half ago. Results faxed to UCLA. Next UCLA needs to contact health insurance for pre-approval for transplant. We plan to follow up with UCLA on Thursday.

Mark's 36th birthday was yesterday. I told him he better hang on tight because we are going to take the next 36 years on together like nobody's business!

Thursday, June 19, 2008

New News and Good News

So finally some good news with this whole cancer thing. I went to have another CT scan done last Friday. The purpose of the scan was to see how these drugs were working on the tumors. I was fairly sure, actually certain, that my tumors had grown because I have been having a bit more pain in my abdomen lately. I've had to take more delauded (a pain medication) in between my regular dose of morphine. So I was not expecting much good news. Well I was wrong and quite shocked when I read the report. The compared the results to a scan I had on 12/28/07. This new report said ...

There is interval decrease in size of innumerable metastatic hepatic lesions. For example, the metastatic lesion near the dome now measures approximately 3.3 x 3.7 cm froma previous measurement of approximately 5.1 x 4.7 cm. In the corresponding plane, the bulk of the largest mass in the posterior segment of the right lobe of the liver now measures approximately 6.5 x 4 cm from a previous measurement of approximately 9 x 6.5 cm.


So this is obviously pretty good news. We saw Dr. Hecht and Dr. Busuttil yesterday, my UCLA Oncologist and Surgeon. My Oncologist said this result was quite remarkable and not many people respond that well to drugs, especially to a drug that isn't even meant for the type of cancer I have. The plan will be to keep on this Nexavar until it looses it's steam and then we will see where we are at and figure out what to do from there.

At our appointment with my surgeon, Dr. Busuttil, everything went quite good there also. We are still on track to get a liver transplant as long as the tumors keep themselves confined to the liver. We found out I am a type O blood which means there are a lot of other people with type O ahead of me on the list. Type O is the most common blood type.

They did talk to us about one way to get a liver sooner then later. There is this rare disease that some people get where their bodies don't make a certain enzyme and they have to get a liver transplant. These people get to the top of this list very quickly, within a matter of days I think. Their liver has to be replaced but their old liver would work fine for someone like me who produces this enzyme that would kill off whatever it is this disease is. If all of that makes since. Basically they need a new liver but I could use their old one. There is no one like that at the hospital now but if one does show up the Docs will be keeping me in mind. It's a way, they say, to get a liver to someone who doesn't get "fair treatment" from the UNOS group who decided who gets the livers. It's not that it isn't fair treatment, but someone like me gets dropped through the cracks because of the type of cancer I have. Maybe someday they will fix that but for now we have to deal with it the way it is.

Right now I am still not listed on the transplant list. I am going tomorrow to get the last of the labs done. Once the results get sent to UCLA they will send my info to the insurance co. to get approval. At that point I've been told the insurance co. will want me to get some more labs done. After I do those they will review the results and hopefully get approved. I am through with the UCLA side of things, that all went very good. Now it shouldn't be much longer. Lets hope.

Thank you all for checking in on us. Jenna and Jonathan are doing great! We all just hang out and do our thing. Jonathan is getting so big. He actually stood up on his own the other day. He pulled himself up from a sitting position. I almost crapped my pants. I think he did!

Tuesday, June 10, 2008

Latest Scoop

Has it been a month since I posted anything? I have been soooo blah about writing anything to do with hospitals, doctors, medicine, insurance...blah blah blah blah blah.

With that said we have new news. We heard from UCLA today and we have an appointment with our regular UCLA oncologist next Wednesday and a CT Scan before that appointment. Our oncologist has made us an appointment for that same day to also meet with the Chief of Liver Transplant Surgery (who is also the doctor that performed Mark's pancreas surgery). This doctor is very well renowned and we are so fortunate to have him on our team. This meeting is to discuss possibilities and options regarding getting Mark a transplant sooner than later. We are hoping Dr. Busuttil can assist in getting Mark's MELD score raised so he can be on the "active list" for people awaiting a transplant. Or another way to put it, we would hope for a transplant before the one we got goes kaa-poot, kaa-pesh?

I would also like to say a big thanks to our friends who came out to support us at the Relay for Life Walk. It was an emotional morning. Just the fact that we were there was upsetting for me. And during the opening ceremony's Survivor and Caregiver Lap I cried thru the half of the it as Mark and I arm and arm pushed the baby carriage around the lap. But at the end of the lap we were embraced by Anna and Michael. I had never been so happy to see two other people and their big, distracting smiles. The team we were on called us that following Monday to say we had raised a lot of $$$ and that many people came by the booth to check in and say they were walking on Mark's behalf. Much appreciated to you all for your time and donations.

We will update that blog after next week's appointments.

Tuesday, June 3, 2008

Long Time No See

Hey all, it has been quite some time since we have posted anything on this blog. But then I guess you know that. It seems as though nothing is progressing as far as the transplant goes and life is going on as usual. There just hasn't been much to say.

But now we have just done the Relay For Life this last weekend. It went great. I'd like to say a big THANK YOU to everyone who donated money to the cause and also a big THANK YOU to everyone who came out to walk. Thanks to all of you Jenna and I raised a little over $1300 to contribute to our team! WOW!!! The whole thing was a huge blowout. Is that the right word? I don't mean the type of blowout in your underwear, but the kind where lots of people show up and have a good time.

So again ... THANK YOU - THANK YOU - THANK YOU!!!

Tuesday, May 13, 2008

First Step Down

UCLA has accepted Mark into the Liver Transplant program... YAY! What this means is the first step in the process is completed. Next...UCLA will contact Mark and let him know what score he was assigned. You need a 28 out of 45 to actually receive a liver transplant. As one's healthy gets worse your score goes up. Since there is a such a high demand for organs, you must have a score of 28 or higher. After we find out Mark's score and any other details they share with us, UCLA will contact Blue Shield (our insurance). Then Blue Shield will need to also approve the transplant (basically the insurance company needs to let UCLA know that they will pay for the transplant when it happens). And then Mark will be on the list. Sorry for the clunky explanation, I hope you catch the jest of what I am trying to share with you.

Thursday, May 8, 2008

Revised Blog, I didn't like what I wrote before...

Mark had more tests this week for the Liver Transplant Evaluation. A t.b. test and a respiratory test. He scored super high and his lung functionality is over 1oo%. Every test he takes he passes with flying colors. If it wasn't for the pesky cancer tumors in his liver he'd be in perfect health, but isn't that the truth. His doctor upped his Nexovar dosage to 2 pills in the morning and 1 in the evening. God willing his feet don't get all yucky and hurting again. But more than anything the Nexovar gives him what we now call the Nexovar Naps. We all use to make fun and call him Mark-colepsy because he could nap anywhere, anytime, ... in a edit bay when on a late night on- site, on a friend's couch during a BBQ, in his car, you name it ---- the man could work long hours but also was the same guy who could sack out on your couch during the SuperBowl. OK I veered off subject but you get that point "he and jonathan now both need to take their naps". Gives me time to catch up on my TIVO'ed reality shows. :)
At the end of today we heard from UCLA and atlast they have all the tests they need. Amen... So now at some point in the near future the board will meet and present his case and discuss him. I am amazed at how nonchantlant we both are now about this, that and everything. We are now just at odd peace with finding out info when its given to us. Not losing nights of sleep until we get the next result, or whatever. We want to live a normal life in between Liver Transplant tests, evaluations, CT Scans, blood tests, etc etc etc. So we squeeze in normalcy and enjoy every last drop. I so appreciate a nice boring night of a Block Buster movie and a frozen lasagna. How lucky am I, is what I think to myself, because I remind myself "this too shall pass" --- and that goes for the good times and that the difficult times.

Friday, May 2, 2008

Hang onto your pancreas!

Ok we were at our UCLA oncologist for a routine check up on Wednesday morning. I was hitting these big speed bumps in their parking garage and I called out to Mark "hang onto your pancreas!". We almost died laughing at ourselves. Speaking of UCLA Mark heard from the coordinator in the Liver Transplant Center this week. She informed him that they realized they forgot to book him for 3 more tests he needs for the liver transplant evaluation. So he is working with his insurance to get those scheduled. So many tests...so little time. She also informed him that most likely he will get the rating of an 8 from UNOS (the organ transplant national committee), he needs a 28 to qualify to receive a liver transplant. Which of course is discouraging. Its such a long story as to why he is only an 8 but I am going to try to make it brief. Cancer tumors don't effect the functionality of the liver until there is like a million tumors. So she said UCLA will probably reach out to UNOS and plead Mark's case on his behalf in an effort to bump him up on the list... etc etc. Really if its not one road block its another. We are amazingly taking them all in stride because we have learned through our Eckhart Tolle "A New Earth" that you can't worry a problem away.
Otherwise Mark's feet and hands are doing better on the lower dose of Nexovar. He has this weird foot nerve pain but its way better than the sores. They have him taking all the pills in the morning which is making the fatigue you get from these pills more intense, for example, he fell asleep in the Vons parking lot yesterday. Clearly he is tired.

Otherwise, we are doing good. ...and the beat goes on and on.

Monday, April 28, 2008

Relay For Life - The American Cancer Society


Hello All,

This year I will be participating in the American Cancer Society’s Relay For Life. It will be held in Santa Clarita beginning the morning of May 31st for a full 24 hours. Its at Central Park on Bouquet Cyn. I am on the weSpark Cancer Support Team. All the money raised will go to the American Cancer Society, to help in their research efforts. weSpark is the cancer support center I go to each week to meet with other people who are going through the same kind of thing I am dealing with.


Each team will have a booth, offering games or food to anyone that comes by to say hi or participate. At night they have what is called the Luminaria Ceremony which is where there are hundreds of bags placed around the track, lit by candles. There is a concert in the evening too.


Our team, like all the others, is looking for donations. Anything would help so even if it’s just the dollar you have in your pocket, we would appreciate it. We are also looking for people who would be willing to walk for our team. Each team keeps at least one person on the track at all times. Usually people are scheduled to walk for an hour. From what I hear, it goes by pretty fast and you can walk with your wife, husband, girlfriend, boyfriend or kids. The only wheels allowed on the track are strollers and wheelchairs. Sorry, no rollerblades or bikes.


If you are interested in donating your time please let us know (call or email Jenna or I) - and we can get you signed up to walk. If you would like to donate money, drop us a donation in person or mail it to Jenna at our work. Please make any checks payable to the American Cancer Society. If you do mail a check, keep in mind we have to have all the money turned in by the day of the event.


Jenna Andrews - Relay For Life

11311 Camarillo St.

North Hollywood, CA 91602


Thank you all for your support,
Mark Andrews
marka@ladigital.com
818-254-5848
Team weSpark

Friday, April 18, 2008

Week in Review

Mark had the nuclear heart test thing today. Took a few hours and it involved a nasty I.V. but its over and done with. Day Four on the chemo drug stuff again and Mark's hands are starting to hurt just a tiny bit (fingers crossed it gets no worse), his feet are OK and I noticed his face looks a bit rosy like last time (with his fair complexion its more of a glow, haha). Other than that Mark's appetite has been back in full force. He pounds a box of powdered donettes daily. I ran into a friend at the market and my cart only had high calorie snacks, I blamed Mark.

The "Dr. Ferber - Cry It Out" Method actually works. We are true believers now and plan to extend our skills to our friends and family...SuperNanny-style should you need our services. Jonathan slept from 7:30p to 5:15a last night. It was awesome to get lots of sleep and to have our bed back.

We'd also like to give a special shout out to our Nurse Case Manager, Ronda. When our insurance company called to say they were assigning us to a case manager, at the time it only scared me more. I was like oh Lord you know you are in trouble when A) the insurance company calls you - that never ever happens B) when they assign someone to you because you have the potential of needing help. When we met Ronda at our home we were still in full blown shock about everything going on. Since the moment she met us she has genuinely cared about us and given us great advice. She calls us each week to see how things are going and we know she will be with us for the long haul. Ronda Rules !!!

Tuesday, April 15, 2008

Round Dos

Mark started that chemo drug, nexovar, again today. We are keeping our fingers and toes crossed that Mark doesn't get the crappy side effects he got last week. Tomorrow and Friday UCLA is having us get more heart tests. Should be easy tests. They want to make sure Mark won't die of a heart attack during any possible surgeries etc etc etc. That is it for now.
Other big things cookin' are:
Maddie had ear tubes put in today ---- yay went super well.
Going to try again starting tonight to get baby to sleep thru the nite in his crib. I am dreading this 'cry it out stuff!!!' I am actually fearing this evening. Godspeed as Anna says!
Gearing up for the McCullough big move circa 2008! Mark's got his toolbelt ready to rock...

Tuesday, April 8, 2008

My Ugly Foot

Here is a picture of my foot so ya'll can see what this nexavar is doing to my feet. Those white spots on my big toe and fourth toe are what really hurt. There are a couple of more of those on my foot that you can't see in this picture. I am getting them on preasure points of my feet. My other foot isn't quite as bad yet but it's getting there. Hopefully this will start to go away soon.

Final Day Of Evaluation

Well today is the second and last day of the liver eval. We have a psyc, social and cardio evaluations to do today. It shouldn't be too bad. Jenna has dropped me off at the building we are starting at because my feet are killing me. I have a hand and foot syndrome from the Nexavar pills that is driving me crazy. It is very difficult to walk and is getting more difficult to use my hands. I hope this goes away quickly. I stopped taking the nexavar yesterday morning but it is still worse today. Once it has cleared up we will start the pill again but at a lowe dose. After we get home I am just going to put my feet up and relax a little. Wish me luck and keep your fingers crossed that they don't think I'm crazy at my psyc evaluation. Here comes Jenna, gotta go.

Monday, April 7, 2008

Day 1

We are still at ucla. The interviews are brief with each specialist ... Its the 1-2 hour wait per appointment that makes it a long day. Lots of waiting. We had our orientation, met with a surgeon and a hepatologist, so far. Every doctor seems very upbeat and positive, which is helping us relax a bit. We got here at 6:30a and Mr. Jonathan was up for 2 hours in the middle of the night (total night owl like his dad)...so we are a bit tired. That its for now.

Saturday, April 5, 2008

No go

Incase anyone is curios. Our mission BABY IN CRIB failed miserably. After 20 minutes of crying and repeated attempts he landed in our bed at 2a. Oh well we tried!

Friday, April 4, 2008

Monday back to UCLA

So Monday we are booked to start our Liver Transplant Evaluation. We need to be at UCLA Monday at 7:15a. EARLY! Its a 3 day interview, we meet with about 12 doctors. They poke and prode Mark and then in about a month they let us know if we are infact a candidate for a liver transplant. Should be cut n' dry, right? but nothing ever is so we are wating to see how this rolls out.

Jonathan had is 4 month shots today. He weighs almost 17 pounds! And the doctor says "he is growing beautifully".

Mark's lab reports came in and they say he might also have Rumotoid (spl?) Arthritis (spl?) and/or Lupus (spl?). At this point Mark and I looked at each other and said "if you can't die from either, then whatever we will work it out and sort it". Mark's appetite has been back this week so together we have been piggin' out. I have discovered thru this that we eat and don't eat together. So if I look too skinny ... blame him HAHA.

Trying to get the baby to start sleeping in his crib (not our bed) tonight. Someone please call Super Nanny, we may need back-up!

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.


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.

Friday, February 29, 2008

Thursday, February 28, 2008

If you don't have anything nice to say...

If you don't have anything nice to say don't say anything at all. If I lived by that saying there would be days of silence for me. Just kidding- but really not everything I feel or say can be this uplifting message or positive outlook. Sometimes there is nothing more satisfying than a good ole' bitching session. You know the type where you sit down with a close friend and just complain and complain. Since I feel blah at this moment, I am going to write nothing at all. May my nothing say everything.

Monday, February 25, 2008

Liver Transplant Evaluation Appointment

UCLA called us today to set up the appointments with their Liver Evaluation team. We really don't know what the evaluation will cover as far as what exact tests, meetings,etc will transpire. We go to UCLA for 3 to 4 consecutive days and meet with numerous doctors. And they determine if Mark is a candidate for a liver transplant. We are really excited to tackle this phase of the process. But we are also a bit intimated by the formality of it all. Can someone on the team decide that for whatever reason we won't qualify? like they find out Mark's feet stink or he can't get his golf score under 100 (sorry hun). Or is it like a quiz and we need to earn a certain number of points to pass? Everything I find on the net just says you meet with almost 10 doctors (including a social worker and a physcholgist...Lisa perhaps you can give us some pointers). I am a nervous Nellie by nature so the appointment isn't til March 17th so this gives me almost a month to worry, wonder and hash out... HAHA. If worrying was an Olympic Event trust me folks I'd be bringing home the gold.

Sunday, February 24, 2008

Bounce... bounce... bounce

Mark turned another corner this weekend and he is really moving and getting around well. Well enough that he can help more with the baby. Mark keeps telling me he is so happy that he can contribute to taking care of the baby too. He has told me like a zillion times since he came home from the hospital that he hates having to watch me do everything related to taking care of the baby. And I knew it bothered him, so I kept reminding him (and me when I felt I was starting to unravel) that he would soon feel strong again. And yeah that day is here!!!
The most exciting thing that happened this weekend involves one of those big exercise balls. Our friend Chris had told me that they used one of them to bounce their kid to sleep. Previously, I had been walking & bouncing around the house for hours with Jonathan when he would have a gassy night (which seemed to be like every night lately). So now we have been sitting on the ball and bouncing, bouncing, bouncing our lil' man ... making all 3 of us very happy.
We had a great weekend. Relaxed, went to Ryan's birthday party (it was at an indoor play yard with this massive 2 story blow up slide- everyone went down it...even Mark) and the 3 of us ran errands today. I can only anticipate that this week will be good too.
Well I had more stuff to say but to get to this point I had to reboot my laptop twice. And in doing so it seems that my frustrations have zapped my creative juices.
Going to bounce my lil' butt to bed. How exciting...Mark is going to try to take the first feeding tonight (which usually strikes between midnight and 2a).
Nitey nite.

Thursday, February 21, 2008

The Long Road Home

Anna and I after she broke me out


I can't believe it's been a couple of weeks since I've posted a blog. The picture of my guts doesn't count. I believe I was still in the hospital and I was frustrated with writing on my cellphone. Now that I have a computer in front of my it is a lot easier to type and yet I still haven't sent out a blog. Thank God for Jenna, keeping up her blogging, or they might have shut down my blog by now. Sorry for the wait. I wonder how many of these apologies I will write.

So now I am home and by now feeling much better. It was great to get out of the hospital. Obviously. I was ready to leave a few days before they were ready for me to go. That made it very difficult. I don't have a problem with being in the hospital if there is good reason. The last couple of days there, I was getting up much better, eating solids and feeling better about the c-diff. I would get up in the morning, get dressed, and then sit around the whole day. It got old, quick.

Thankfully I have very good friends and family. Jeremy came to visit me almost every day. I know that must have been a pain in the ass driving down there on the 405 durring rush hour traffic, but he did it. He brought his laptop with him and a couple of DVDs one night. We tried watching "Balls of Furry" but we had to turn it off. In the opening of the movie, the main charicter is hitting a ping pong ball off another guys head. It made me laugh so hard. And because laughing made me hurt so bad it became funnier and we laughed even harder and it hurt worse. We couldn't stop laughing so we had to turn off the move and Jeremy had to leave the room.

Jenna also came down to visit me all the time which was great. I know I couldn't have done this without her. She was, and is, such a trouper. It's amazing the kind of strength she has shown. She would go to work every morning, drive down to the hospital to see me, and then go home to take care of Jonathan. It was so tiring for her and yet she kept on. I don't think there is any way for me to say thank you enough.

Then there is Nicole, Jenna's sister. Nicole works at the hospital in the NICU department. She works down on 2nd floor on Tuesdays and Thursdays. On the days she worked, she would come and visit me at least 3 times during the day. It was so nice to have someone so close by. One afternoon when Nicole came to visit, we went on a walk and I got to see the room she works in. It was like a little field trip. I even had to get my permission slip signed by the doctor.

Finally the day came for me to go home. It was a little passed due. I couldn't sleep well the night before, knowing they were going to take the drain out of my side. This drain is a plastic bulb connected to a tube that runs into my gut. It went into me just below my incision. I had been told it was uncomfortable to take out. I had heard that before when they were going to take out my nose tube, so I knew what that meant. It was going to hurt. And it did. They started pulling on it. At first it wouldn't come out. They had to lay the bed down further and try again. The second try worked. The end of the tube is bigger then the tube itself so when they pulled it through ... lets just say it sucked! But finally it was out and I was free. I packed up my stuff and within about 20 min. they had a wheelchair there to take me away.

Jeremy was coming down from Valencia to get me but I was afraid it was going to take a while in the traffic. I wanted out sooner then that. I called Anna, a good friend of Jenna and I who works with me at LADP Santa Monica, and she agreed to come get me. Anna and Glen (another friend of ours whom we work with) were just pulling up to the loading dock at the same time I arrived. It was so wonderful, finally freedom. Not just any freedom either, this one came with an Ice'd Mocha from Starbucks! Thanks Anna and Glen!! They took me to the office, which is very near the hospital, to wait for Jeremy who showed up the same time we got there. Glen took a couple of pictures of my scar and then I was off for home.

I'm going to quit this post here. I've got things to do today and I want to get this up on the board sooner then later. Everyone is doing great though. I am able to do more and more each day. I am feeling stronger, better and faster ... cue the Six Million Dollar Man music. I made a video the other day, "A day in the life". It was too boring to post though so all you get is this. Enjoy. I will start work on my next blog tonight. It seems like there is so much to write about and at the same time nothing. If that makes sense.


A picture of my scar

Sunday, February 17, 2008

Wow... That's a lot of ouwies !!!

"That's a lot of ouwies" Dylan McCullogh Feb. 16, 2008.

That was the quote of the weekend. As Uncle Mark lifted his shirt to show Dylan his scar and to explain why he was "fragile". Phew Dylan was super sweet and checked it out. I really have come to admire kids. Being the quintessential planner, I have already wondered how or when Jonathan will kinda grasp all that had surrounded and changed his world when he was only 13 days old. Will he understand all of this or does he even really ever need to know? All I have to say is, if my son sleeps in our bed or isn't potty trained til' he's 4 yrs old... please cut me some slack.

Mark wasn't a baby himself this week. He pressed on, got another chemo shot in his tiny bootie, hobbled around the mall and into our work one day and tonight we enjoyed sushi (take-out) with Jeremy. We have an appointment with Dr. Singh this Tuesday--- we will fill her in and we are seeing her to get more pain meds and an insurance referral to a UCLA Hepatologist and a G.I. doctor.

Friday, February 15, 2008

Wrapping up the week with a pretty bow!

All and all we liked to give this week two thumbs up. The baby went to bed at like 8 or 9 each night (he still woke up like every 2-4 hrs to suck down a bottle but he didn't pitch a massive fit all evening like he had been..YES!). Work was all about change as my Ops Room was repurposed displacing me temporarily to another office and a new office-mate (and super close to Tammy's desk!!! fun fun fun)... change is always good right? Our UCLA doctor appointments were not epically informative, but confirmed we were on the right path and biopsy reports indicated from the tumor they removed from Mark that we are fighting the cancer suspected (I was waiting for them to come back and say "oh sorry you are fighting that crazy, aggressive cancer that the doctors originally diagnosed us with" so now I can breathe knowing time is on our side - PHEW). Mark's "cool" 36 stapes were removed and replaced with not so "cool" tape. ...And the church hooked us up with yummy meals each evening- anyone who helps me plump up my Mark is a friend of mine. So all and all I hope you feel as satisfied with your week as we are with ours.

Tuesday, February 12, 2008

Blog Slackers

Lisa told me I am now a blogger...feel very hip (once she explained to me what that was). So now I blog...

Long weekend. Settled in. Realized that hospitals are no fun but they did wait on us hand and foot (that is the saying, right?). Mark is moving around really well. He did go awall once on me, and walked to the Old Navy around the corner from us, and I freaked out on him and made him promise not to ever do it. He is very bored and is pondering taking the city bus to get around since he can't drive yet. "nobody walks in L.A." but the bus ... seriously people he must be bored.

Otherwise, we are doing a lot of eating. We need to fattin' him up. I swear Mark is now known as the skinny one of the two of us and I just can't be married to a man with a smaller bootie than mine! HAHA. So like that book I keep wanting to read we continue to "Eat, Love and Pray".

2 UCLA doctor appointments tomorrow ... stay tuned.

Thursday, February 7, 2008

The Guts Of It

Here is a picture of my spleen and pancreas. I asked the doctors to take a picture while I was in surgery and they were nice enough to comply. I've Photoshoped the original so as not to gross anyone out. I also have a picture of my abdomen while they were cutting away. It's pretty cool. My plan is to come up with some kind of look I like and have a set framed. I will probably wait till I can get a picture of my liver to go with it. This was one quick attempt at doing that. I have a feeling I will be messing around with this quite a bit.

Smiley :)

Yea Daddy is Coming Home !!!

Jonathan is all smiles because Mark is coming home. Jonathan and I are so excited!!! Anna (our westside connection) is picking him up for the hospital right NOW.Publish Post

Wednesday, February 6, 2008

One Flew Over the Koo Koo's Nest

Totally sucks. Mark has to stay at the hospital one more day. If they don't get him out soon I think he is going to need to be moved down to the Psych Ward. He is feeling good though. They put him onto the MS Contin that he normally takes at home and that is managing his pain. So now we just wait. If they don't let him out tomorrow, Jeremy and I will start to picket in front of the hospital :)

Tuesday, February 5, 2008

Just A Little Update

I'm still here in the hospital!! I should be going home tomorrow. Some crazy things have been going on here. I've made two room changes in the last two days. One change was due to a guy they placed in my room. He kicked a nurse in the face! I asked to be moved. Then they found I have a bacteria called 'C-Dif' and they put me in a private room. I got it from the antibiotics killing a good natural bacteria that fights this c-dif.

Its hard to type on my phone so I will write a longer update when I have a laptop in front of me or when I am finally home. I'm doing great though. Today is my first day of solid foods. Very exciting although I have to take it real slow. Thanks again for all of everyone's support. It has helped make this bareable. Until next time.

The Count Down is On

Work, hospital, go home and feed baby during the wee hours of the night. Repeat as needed. Phewie the cycle is almost over. We are very hopeful that Mark will come home tomorrow. He is feeling better. They are getting his pain back under control (they tried cutting out all pain meds until he had to remind them nicely "what about the pain I have from the liver tumors"...oh yea keep the drugs coming please). Mark can have solid foods today. Poor guy has not had a morsel of food since last Sunday. Yes that is like 8 days ago. Lets place bets on how much weight Mark lost. I say like 8 pounds.

Sunday, February 3, 2008

You know you have a small....

You know you have a small TV when your foot is bigger than the TV screen.

Nose tube out!!!

Nose tube is out!!! Mark is so happy. And now he is enjoying a delish cup of ice chips. Tomorrow he gets broth and jello. And his pain is under control too. Next is getting him home. I can't wait to have him home with me and the lil' dude.
We are getting ready to gather around the 9 inch TV screen in Mark's room to watch the big game.

Yeah!!!

I've never been so excited about this before but I just (in order to not offend anyone, please pick your own term) ...

backfired
baked a breeze biscuits
baked brownies
blew ass
blew a gasket
blew the sparkplugs
boom-boom
broke the seam
broke wind
busted a grumpy
busted ass
butt yodeled
cleft a boofer
cracked ass
cracked the ripper
crop dusted
cut a gasser
cut a melon
cut one
cut the cheese
droped a fart
erupted one
executed one
fluttered the sheets
let Fred out
let one
let one rip
let wind fly
made a bingo
made a stink
passed gas
piffled
played the butt trumpet
pooted
pop off
rip ass
rip one
rip the canvas
roared from the rear
shoot the breeze
sunk my battleship
sneezed in one's pants
split the seam
started a Harley
started the engine
step on a duck
step on a frog
stomped on the barking spider
stripped a gear
supplied it
tainted ripper
tooted
vented

YEAH!!! The tube can finally come out. Ok ... No more talking about this kind of private stuff. It's not like I want the whole world to know. I'm shy.

Saturday, February 2, 2008

Antsy Pantsy

We are both getting a bit antsy. We are ready to feel great and go outside and play. Patience is a virtue and we keep trying to remember to take deep breaths, get good rest and soon enough we will be home. Home sweet home.
Mark is looking great. And he is using the morphine much less. He has gone on four 30 minute walks today. Once he stinkers he can get that darn tube out of his nose. Do you know how many times I have gotten annoyed when he rips a stinky fart at home and now I actually found myself praying earlier today for Mark to fart. Even I see the humor in that. So on that note everytime you fart tonight think of Mark (heehee).

Friday, February 1, 2008

Thank God Its Friday

So we made it thru to Friday. Day 4 and counting. I am at work so I haven't seen him yet. Mark reports that the pain is pretty controlled but he can't move around super well and sitting up or getting out of the bed is painful. The goal today is to walk the hallways 3 times... Mark said, "no problem" and he just wants to do whatever the doctors want so he can heal quickly. He was disappointed to find out that they will not be removing that tube from his nose until tomorrow and he won't be able to go home until more like Tues or Wed.

The baby is doing good. He is still getting up 2 to 3 times during the night though. Thank god for my mom and sister taking turns sleeping over our house and helping me. There is no way I could have gotten thru the week without some assistance. My other sister has been doing the "swing shift" between when the nanny leaves and I get home from the hospital. And Lisa offered to watch the baby on Sunday during the day- which is super helpful, so Jeremy and I can watch the SuperBowl with Mark at the hospital... GO GIANTS :)

Thursday, January 31, 2008

P.S.

..and thx for your posts and comments. They get emailed to each of our phones... And I know he enjoys the contact with the outside world.

Jan 31rst Flippin Britany

let's just note and move on...
Ok first of all I had to park at the beach cuz the parking lot was full due to the zoo here cuz of britany spears. Enough said about that poor woman although if she wants a real problem Mark would be happy to trade with her.
today mark looks SOOOO much better. Bit of color back in his pale complexion (oh sorry he likes to be called fair not pale...my bad :)
the pain is under control now too. Pain is at a 2 today which makes me sleep better tonight. Of course he can't move around well but he did get in and out of a chair all by himself. Isn't it amazing how the human body heals? So today he is chillin, healin, and I am enjoyin one too many snookie cookies (thx much). :)
so day three seems to have taken mark to better spot and he isn't climbin the wall in pain. I just can't til he can come home. Hospitals are no fun ....i really don't know how cole and lisa work at them. but modern medicine is truly amazing.

Up And At'em

The pain is much better today. They switched me from dulodid to morphine at about 3am. It really didn't help until this morning when the doctor ordered an anti-inflamitory/pain releaver. Now all is good. Nicole (Jenna's sister who works here in NICU) explained to me that once it is under control, it will be easier to maintain and manage. Thank God. It wasn't the incision that hurt either, just the area where they cut out my pancreas ans spleen. The incision did hurt if I was getting up and used my stomach muscle. I'm trying to find away around that.

The doctor wants me to try walking around today. So far I have had to walk in place because of this tube coming out of my face. They are going to get a plug for the tube so I can actually walk around later.

My magnesium was low today so they gave me an iv of that. There was no place to put it in my arm so they put it into my neck and moved all the other iv stuff to my neck so we can keep them all together.

I'm thinking tomorrow will be even better. I hope they pull this thing out of my face so I can eat some of those Snookies Cookies LADP sent me ... Before everyone else eats them up.

I also want to say thank you to everyone who has been sending me messages through the blog and email. It really picks up my spirits when I see a new one. One more thing, sorry about all the bad writing. I am posting via cellphone which is very hard. Till later.

Wednesday, January 30, 2008

Today Jan 30th

Hi there... Today was less painful...physically and emotionally. Mark's pain level was at 10 yesterday he said and today an 8. Which I was happy to hear. The surgeon came in this afternoon to check on Mark. We really like him. My brain is sorta shot so I can't think of what to write. But Mark is healing and so far no complications...and he sat up twice in a chair. Small steps... And tomorrow they may have him walk a bit.
Thanks for thinking of Mark and keep him in your prayers.

Pic

Realized it didn't get posted.

Tuesday, January 29, 2008

Alive and well

I just wanted to send this out mydelf to lrt everyone know I a. Doing good. A cit of pain but otherwise ok. Thqnks again for all your prayers.

Mark

Us

Mark is in recovery still. Surgery went good. Tail of pancreas and tumor gone. Spleen out. We need him to recover and next surgeon told us we do the liver transplant. The first request of mark's was he wanted me to update the blog and take a picture of him he smiled in pic but don't be fooled he is so much pain I can't stand it.

Monday, January 28, 2008

Tick ... Tock ... Tick ... Tock

In just a few hours, Jenna and I will be getting up to go to the hospital. Yes we are a little nervous. I just feel bad for everyone that is going to be sitting around the hospital waiting for me. How boring is that!

Yesterday my parents came into town. On the way home from the airport we did a drive by of the hospital to make sure they knew where they were going. Today we went to the mall and I got a bunch of magazines for this next week. After that we took a little trip down to the San Fernando Mission. I've been frequenting the mission since I came out of the hospital this last time. It is a very nice place to go pray and get yourself centered.

Tomorrow, Jenna will be updating the blog as the day goes on. We found a cool way to do it through our cellphones! I will try to update it also as soon as I can.

I just want everyone to know how much I appreciate your positive thoughts and prayers. I really mean that! It is very nice to know there are so many people out there who care.

Saturday, January 26, 2008

Its all fun and games until someone loses a spleen

…our friend Chris says that and now its quite appropriate!


Nervous? Yes Anxious? Yes I just want the surgery over. Its that feeling like you just want to fast forward and shelter your loved one from any impending pain, worry and stress. Mark is a trooper (better than I’d be) but at the end of the day we both just want the surgery over and to have him back home. Today was the type of family day I love. My wish--- that I could freeze time and savor today… Baby is sleeping, Mark did some work around the house, I cleaned up things... and now the house feels super cozy, clean, and safe. Safe being my key word. I want us all safe. Mark safe. Baby safe. Family and friends safe. That is what I miss most since this all of this started --- that safe feeling. See this is why I have avoided writing in this blog. I don't want to be all weepy. I knew I couldn't come up with anything clever or fun. Mark and his amazing attitude and ability to keep things normal is what is getting us thru this. He is just concerned most right now about cleaning his car out for his parents to use when they are in town. I use to wonder--- how I have I been functioning for the past 57 days? ... and now I know its because of Mark's indescribable spirit. Its contagious.

Friday, January 25, 2008

A Change In The Plans

My surgery has moved from Monday to Tuesday of next week. It turns out the surgeon is going to be in Dallas on the 28th. Oh well. At least it was only moved one day. We met with the anesthesiologist yesterday and that went good. They are going to give me the "Juice" before my surgery to make me feel all warm and fuzzy inside. I'm real happy about this. So far we are scheduled to be first in but we may get bumped if an emergency comes up. We also spoke with a nurse at UCLA about what we can expect. Here is the rundown ...
  1. Surgery should be around 5 hours.
  2. I will either be moved into ICU or a Recovery Room after Surgery.
  3. After about 3 hours or so I will be moved to my room.
  4. All rooms are shared (this sucks). Private rooms are an additional $200/night!
  5. The incision will look like a Mercedes symbol.
  6. They will use staples instead of stitches.
  7. There will be two drains attached to me and they are very uncomfortable to remove.
  8. I get to go home once I can walk and go to the bathroom.
It really is too bad the day was moved. I was very happy with all the things that happened on January 28th. Especially the King Henry stuff. That was my good luck! Now that we are on January 29th I have had to do a little more digging. I have been able to find another lucky charm though! It turns out the greatest football team ever won the Super Bowl on January 28th and the 29th. Of course I am talking about the San Francisco 49ers!! Now that is good luck!



Events From January 29:

  • 2004 - Cannabis and cannabis resin downgraded from Class B in United Kingdom
  • 1995 - Super Bowl XXIX: The San Francisco 49ers defeat the San Diego Chargers 49-26 and become the first NFL team to win five Super Bowl titles.
  • 1963 - First inductees into the Pro Football Hall of Fame are announced.
  • 1959 - Sleeping Beauty, an animated feature produced by Walt Disney based upon a fairy tale, is released.
  • 1936 - The first inductees into the Baseball Hall of Fame are announced.
  • 1916 - World War I: Paris is first bombed by German zeppelins.
  • 1891 - Liliuokalani is proclaimed Queen of Hawaii, its last monarch.
  • 1886 - Karl Benz patents the first successful gasoline-driven automobile.
  • 1856 - Queen Victoria institutes the Victoria Cross.
  • 1845 - "The Raven" by Edgar Allan Poe is published in the New York Evening Mirror.
  • 1676 - Feodor III becomes Tsar of Russia.
  • 1595 - William Shakespeare's play Romeo and Juliet is probably first performed.
  • 904 - Sergius III comes out of retirement to take over the papacy from the deposed antipope Christopher.

Birthdays:

  • 1970 - Heather Graham, American actress
  • 1954 - Oprah Winfrey, American producer, actress, talk show host, car giver and publisher
  • 1952 - Tommy Ramone, Hungarian-born musician and record producer (The Ramones)
  • 1945 - Tom Selleck, American actor
  • 1880 - W.C. Fields, American actor (d. 1946)
  • 1874 - John D. Rockefeller Jr., American entrepreneur (d. 1960)
  • 1843 - William McKinley, 25th President of the United States (d. 1901)

Deaths:
  • 1963 - Robert Frost, American poet (b. 1874)
  • 1964 - Alan Ladd, American actor (b. 1913)
  • 1980 - Jimmy Durante, American actor and comedian (b. 1893)

Thursday, January 24, 2008

Keep The Faith Fundraiser

My sister Heather has spent some serious hours putting together a fundraiser for me where my family lives in Sierra Vista, Arizona. She has worked so hard for what looks like quite an event. It seems like almost every day I hear about someone new who has gone out of their way to help us. Of course my sister is such a go getter. Even The Mayor of Sierra Vista knows who we are! I just would like all of you in Sierra Vista to know how much we appreciate your support. It really means a lot to us. I have asked Heather to write a little about the fund raiser. I am sure everyone reading this will be as amazed as I am at all the things she has going on here. Thank you so much Heather!

Ok, The name of this fundraiser is Keep the Faith Fundraiser. It is going to be held at the Pueblo Del Sol Country Club on Feb. 2,2008. It starts at 4pm and goes till 9pm. We have DJs coming in at 6pm and before they get there SFC (Sargent First Class) Amy Morgan will be performing on the piano. We have lots of items to be raffled off as well as a 50/50 raffle and door prizes. We will be having a BBQ for the guests. Some of the items for raffle include Movie passes, dinner passes, golf passes, gift baskets from varies businesses in the area. We also have paintings and other pricey items for a silent auction. Its going to be a great night. We also got a Lutheran Organization called Thivent to match funds from the fundraiser. There have been numerous donations given from people who are unable to attend. The Mayor of Sierra Vista gave a substantial donation as well as many others in the community.


This is Lucky who is holding
a couple of tickets to the fundraiser.
Heather said they have already
sold around 80 or so tickets!






Tuesday, January 22, 2008

Making All The Arrangements

I got my vaccination shots Monday evening. They gave me two shots in my right arm and one in the left. I was a little worried I would start to feel a little 'flu like', a symptom of all three shots, but so far nothing. That is good.

My surgeons office was closed for Martin Luther King Day. I heard from them Tuesday morning though. We have scheduled the surgery for Monday January 28. I do not have to do a cardiogram because of my age. Today I will be going over to Facey Medical Clinic to have some blood drawn for a CBC and Chem Panel. On Thursday I will be taking a little trip down to UCLA to meet with the anesthesiologist and then meet with my Case Manager. We will be going over all the fine details of getting ready for the surgery.

Sunday my parents are flying into town. They will be at our house Sunday and Monday, move to a hotel across the street from the Hospital for 3 nights and then come back to our house with me on Friday.

It seems like things are definitely moving in the right direction. Its nice having it move in any direction really. This is our first step and we all feel good about it.

I was looking at events that happened in history on January 28. While looking at births and deaths, I found one of each that together struck me as odd.
  • January 28, 1457 - BORN: King Henry VII of England
  • January 28, 1547 - DIED: King Henry VIII of England
Father and Son, birth and death on the same day. Also, the two center numbers in the date are transposed. That has to be pretty rare. I have always thought rare occurrences mean you have good luck. Jenna's license plate has 666 in it. That is good luck. Last weekend at Starbucks I got craped on by a bird. What are the chances? That's good luck! So I guess I'm feeling pretty lucky about January 28.

Some other events that happened on January 28:
  • 1990 - Superbowl XXIV: San Francisco 49ers beat Denver Broncos, 55-10 in New Orleans Superbowl MVP: Joe Montana, San Francisco, QB
  • 1986 - Space Shuttle program: STS-51-L mission (Space Shuttle Challenger disaster) - Space Shuttle Challenger breaks apart 73 seconds after liftoff killing all seven astronautsChrista McAuliffe, who was supposed to be the first teacher in space.
  • 1967 - My parents were married!
  • 1938 - The World Land Speed Record on a public road is broken by driver Rudolf Caracciola in the Mercedes-Benz W195.
  • 1934 - The first ski tow in America begins operation in Vermont.
  • 1921 - A symbolic Tomb of the Unknown Soldier is installed beneath the Arc de Triomphe in Paris to honor the unknown dead of World War I.
  • 1887 - In a snowstorm at Fort Keogh, Montana, the world's largest snowflakes are reported, being 15 inches (38 cm) wide and 8 inches (20 cm) thick.
  • 1855 - The first locomotive runs from the Atlantic to the Pacific on the Panama Railway.
  • 1521 - Diet of Worms begins, lasting until May 25

Sunday, January 20, 2008

Pictures Of Us







Here are some pictures of Jenna, Jonathan and myself. We took most of them at a little park right around the corner from our house. Click on them to make them bigger.

Friday, January 18, 2008

Meeting With The Surgeon

After I had my injection on Jan 16, Jenna and I took a trip down to UCLA to meet with my surgeon, Dr. Busuttil. This was our first meeting with him so we weren't sure what to expect. Thankfully they seemed all over the situation and had a good plan.

The first thing they want to do is get me into surgery right away to remove the tail of my pancreas and my spleen. This was the first time anyone had talked about removing my spleen so we were a little surprised. I have drawn a picture to show you what the plan is.

The top picture shows where my
primary tumor is located. The
bottom picture shows what they
will be removing in this first operation.
Click on a picture to enlarge it.

They have found a tumor in the tail of my pancreas. It is sitting next to a vain coming from my spleen and I believe that is causing what is called Varices to grow in my esophagus and stomach. Four positive things:
  • They have found what looks like the primary source and it will be removed.
  • This operation will take care of the varices.
  • People live without their spleen and pancreas tail without much problems.
  • The Cowboys lost to the Giants.
I have to get a couple of vaccinations before I can have the surgery. We are trying to get those scheduled right away. I am getting:

  • Pneumococcal
  • Haemophilus Influenza
  • Meningococcal Conjugate
I also have several tests I will be taking early this week. They will be doing a cardiogram and some other stuff to be sure I am well enough for surgery. I'm pretty sure I'll pass these. We are looking at surgery happening by the end of the week (Jan 20-25) or the next week. I've been doing a little research and it looks as though this is a 9-10 hour surgery. I will be in the hospital for 5 days and the recovery time is 8 weeks. I expect I will be feeling much better long before 8 weeks is up.

After I have healed from this surgery, we have 4 options for treatment, and I will probably be a combination of some of them. My options are:

  • Debulking - Remove half the liver
  • Chemoembolization - I'm not looking forward to this!
  • Hepatic Artery Block - Much the same as Chemoembolization.
  • Liver Transplant
At this point the goal is to prolong my life and shrink/kill tumors. My guess is we would do a debulking and then treat the rest of the tumors with either the Chemoembolization or the Hepatic Artery Block to shrink and kill them. Chemoembolization is usually used as a bridging therapy while we wait for the liver transplant. It is also used as a way to downstage the tumors in order to be eligible for a transplant. I would think we would move into these next steps fairly soon after I recover from the first operation.

So that's what I have to look forward to. On one hand, its real nice to have a more solid plan. On the other hand I'm pretty scared about going under the knife. I would say on a scale of 1 to shitless, I'm sitting in at about a 6.2. I guess thats not too bad. I can handle that.

My parents will be traveling out here for the operation. I will be nice to have them around. Unfortunately the hospital is about 1 1/2 hours from my house in some of LA's worst traffic. Thankfully, UCLA has a deal with some of the hotels next to the hospital. We are going to try and get some rooms there. It will be nice to have them so close by. Maybe they can bring me Starbucks every morning since they are so close! Of course we will also have to get them up to the house so they can see the baby.

I will try to be more timely with my posts this week. We should have quite a few tests to tell about and hopefully we will be nailing down a date for the surgery. Till then ...