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!

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.

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!!!

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.

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.

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.

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 31^st 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