Monday, October 26, 2009

Back On The List

I just got an email from my transplant coordinator this morning letting me know I am back on the liver transplant list. They placed me back at a 25 which is where I was before this whole ordeal. My next checkup is due at the end of January where, if everything is good, I will be bumped up to a 27.

And by the way, 27 is the new 25. When we were first getting on the list a year ago, the average transplant score was between 25 and 27. Those numbers fluctuate depending on the number of livers available in our region. So now a year later, the average transplant score at UCLA is around 28-29. So thus, in January when I move to a 27 I am really just barely keeping up with inflation. Oh well, it just means it will probably be another year before I get the transplant. I've got lots of things to do in the mean time anyway. And right now I am just happy to be back on the list. That's enough for me. Jenna and I were just saying how this feels like someone just told me my cancer is gone. I guess because this is really my only chance at making that a reality.

So what good came out of all of this? Before these troubles I was very unsure about weather I really wanted to do this surgery because it really is a gamble. But now, having it taken away, I'm pretty sure this is what I want to do. It still sucks to have to go through another big surgery but I'm not going to stress about it as much. I have a little more peace of mind.

Jonathan's 2nd birthday is in a few weeks. There was a time when we thought I wouldn't be here to see it. But here I am doing just fine. My big goal has been to make it till he is 3 because that is the age when children develop long term memory and I just want him to remember me. Well now that is just a year away and seems like it will be pretty easy to reach. Along the way we are just going to enjoy the time we have. And if all goes to plan, I will be around much much MUCH longer then that.

Till next time,


Tuesday, September 1, 2009

the latest is the greatest

so its jenna again logged on as mark.
as mentioned before the ct scan didn't show any spot in the hip area (where that first octreotide scan showed something). mark went to ucla and our oncologist there said he was confident that the first test showed a false positive result. our liver transplant coordinator at ucla submitted the ct scan that showed no cancer outside of the liver. and now we are waiting to hear back from UNOS. fingers super tightly crossed that UNOS agrees with UCLA and puts Mark back on the list in his same spot with a MELD score of 25. we should hear back within about a week. as the transplant coordinator said this could all just be a hiccup on the radar and we are back to where we were at. i would call it more of a heart attack on the radar (gez oh if this was all just a false alarm i will be so happy!!!). ok thats what we know. we will let you know when we find out our UNOS Transplant status.

Thursday, August 27, 2009


We are pleased that todays CT scan didn't show anything in Mark's hip area. We are hoping that the first test was a false positive. Its like you hear of false postives but never think we could be that lucky. Maybe we are. So back to UCLA Monday to see what our oncologist thinks. For now still on hold not on transplant list. We will see what Ucla has to say.
Sent from my Verizon Wireless BlackBerry

Monday, August 24, 2009


UCLA went well. The oncologist there said it would be very rare for M's type of cancer to spread to the hip area. And said there could be a chance that the Octreotide Scan (that should a tumor or cancels of some sort in the hip) could be wrong. He ordered a CT Scan of the Hip and Abodomen area. Once we get those results we are to come back to see him. Lastly we did speak with our Liver transplant coordinator and she put Mark on a "hold" status on the tranplant list until all of this stuff is completely worked out and the doctor's have decided what is going on. Will keep ya posted !
Sent from my Verizon Wireless BlackBerry

Sunday, August 23, 2009

This Week

Here is this week. Meet with UCLA oncology honchos (Lisa's word I found funny and true) on Monday/tomorrow. So we are hoping Dr Hecht can shed some light. Or maybe he will know what we do with this info from last week's scan result. Or maybe he will know how we deal with UNOS. Or maybe (haha) you see lots of maybes! Maybe no one has a clue and we are going to have to wait and redo the scan! Ooooh also I had remembered earlier today that the UCLA radiologist found the tumor on Mark's pancreas when the Facey radiologist could not find it SOOOO maybe the UCLA radiologist will be able to see something or know something about this spot that is showing up in Mark's hip area. So this could lead us in a new hopefully better direction with the UCLA experts!
So Monday UCLA oncology. Tuesday ultrasound per our Facey oncologist. Dats' it for now.

Sent from my Verizon Wireless BlackBerry

Wednesday, August 19, 2009


hi all, so our latest Octreotide Scan showed a spot in my hip area. of course we are concerned that the cancer has spread from the liver. we have been told by ucla and unos that if it did spread beyond liver we would no longer be a candidate for a liver transplant. so with that said our two oncologists are teaming up to meet with us to do additional tests, possible biopsy, and beyond that we don't know anything. we are at the we don't know whats going on stage of this whole thing. we have an appt with Facey oncologist Thursday at 2p and then Monday at 2p also, with our UCLA oncologist. at this point we only know what the radiologist found on the scan. once we learn what the oncologist's recommend we will let you all know. never a dull moment for the Andrews' Family. stay tuned... love, Mark, Jenna and Jonathan...

Wednesday, July 29, 2009

Posting from Jenna signed in as Mark (again)

clearly cant remember my log in password...
anyhow... we are still her. on the list at a 25 (i think ok that is bad yes we go to a 27 in November). so we are way up on the list. rolling the pager (which i told Mark pagers are so lame and like so 1991 so he can't let it be visible...only like doctors and Lisa carry pagers these days :) all kidding aside he is dragging that lil ticking time bomb around with him. so surreal really.
we are ready for another round of massive labs and scans. yuk. no fun. and some crazy heart attack and lung test. oh yes we love tests NOT!!! but we are having a great summer. and besides the cancer and impending liver transplant ... we really can't complain... ;)
mark did some changes to his pain meds and really started feeling good again. it was like boom he got sorted out. and he seems happier lately, which i savor. we need him happy and comfy...its my goal in life!
thanks for reading and caring ...


Tuesday, June 23, 2009

Steve Jobs

Did you all know Steve Jobs owner of Apple has what Mark has.... And just had his liver transplant. Just wanted everyone who has read about this or heard on the new, that this is exactly what Mark has.

Tuesday, May 26, 2009

New News

So ucla got word from unos as of today mark's meld score has been raised to a 25. They are doing transplants when your points are 25 to 27 so this means we are actively waiting for a transplant. i told Mark i'd rather just freeze time like it is right now. Too scary! Transplant surgery to major, recovery is months and rejection is always a possibility soooooo cant we jut freeze time like it is right now? Pleeeeeeeaase i asked. I guess thats not how things work. So we will move forward to the next step of all of this, and maybe we really are infact seeing the light at the end of this nightmare......

Friday, May 22, 2009

Recent scans and stuff ...

Recently, I was lucky enough to have a few more scans to see how the old liver and tumors are holding up. The results came back positive. It looks as though the tumors are still there and staying about the same size. And there is no spread. That's the good news.

It was just two tests I had to do. The first one, the CT scan was easy. In and out in 20 minutes. The following week I had to do the Octreotide scan. It's kinda interesting. I don't know if I've ever explained that one. For those who are interested here's how it works.

The type of tumors I have, Pancreatic Neuroendocrine Carcinoma, started in my pancreas and spread to my liver somehow. Blood stream or something. Anyway, so technically, I don't have Liver Cancer, it's always classified from where it starts. So it's Pancreatic Cancer that has metastasized to my liver. Anyhow, my point is, that particular type of cancer is hungry for a chemical called Sandostatin otherwise known as Octreotide. The Octreotide scan uses radioactive Octreotide that is injected into a vein and travels through the bloodstream. The radioactive Octreotide attaches to tumor cells. A radiation-measuring device detects the radioactive Octreotide, and makes pictures showing where the tumor cells are in the body.

So that's what we did. I got injected on a Monday morning, then I went back four hours later for a scan. Usually, the scan takes about 1 1/2 hours. Then I go back 24 hours from my injection time, which is the next morning, for another scan but this one takes about 2 hours.

It was a little faster this last time because they had some new equipment. It was pretty cool because I could watch a screen as the machine passed over me. On the screen it showed all the radiation that was in my body, all concentrated around the tumors. It was also a little scary. I hadn't seen one of these scans before and I was a little amazed at the number of tumors in my liver. I usually think of most of the tumors being on the right side of my liver but from the pictures I could see that there was a very heavy population of tumors on both sides.

I really try not to think about it during the time between taking the scan and getting the results. On the screen I had seen an accumulation of radiation in an area just south of my belt. I just tried to not think about it during the next week while we waited for the results. Although, when I went to pick up my scans, I couldn't read them till I got back to my car. I was so nervous. The whole way back through the parking lot I was trying to figure out how I was going to tell Jenna that the cancer had spread.

Then finally I opened the results and read them. God, my heart was beating so hard. Thankfully, it had not spread. I hate picking up results. The one thing it did say was there was an increase in the uptake of the chemical. But they attributed that to a difference between the old and new machine. They said it was an insignificant amount anyway.

Then I was off to New York! We had a great time, saw a lot of the city. Ate a lot of hot dogs and pizza and hot dogs. And we had a few hot dogs. Thanks to Jenna, we went to the Yankee game. That was awesome. A great way to spend a radiated week. The radiation lasts for about 4 days, during which it's not safe for me to be around Jonathan. By the end of the week, it had warn away and back home I went.

As for the rest of our little family, everyone is doing awesome. Jonathan is talking like crazy. Lot's of words, no sentences yet. Maybe a 'bye bye doggie' here and there. Jenna has been going out walking lately, I'm very proud of her. It's motivated me to try to do some myself although I can't go with her, she is way to fast for me. I've lost 10 pounds since I took off for New York. I'm going to be keeping an eye on that. I don't know if it's from walking or what. I'm not too concerned yet.

And so then that leaves us with the impending liver transplant. With the outcome of these test being what they are, I should be moved up to a score of 25 on the UNOS list. That means we are on track and I am still expecting to get a new liver by sometime November. But there is always the chance it will happen sooner. Yikes!


Monday, May 4, 2009

Does this work?

I havent posted from my phone in ages. Anyhow last weeks CT Scan came back good. No spreadage. Just the same pesky tumors in Marks liver. So today he has the dreaded test that injects him with all that crap and he cant be around baby for the rest of the weeks SUCKS! We should get these results at the end of the week.
Thats all i got for now :)


Monday, April 27, 2009

Jenna here, logged on as Mark (again)

okay i can't remember my password so i keep logging in as Mark. anyhow, here is the latest. today Mark had is quarterly CT Scans and next Monday he has the Octreotide Scan. after these two tests come back clean (i.e. that the cancer is still just in his liver only) then our MELD score gets bumped to a 25. back in November we were told they were transplanting at a MELD score of between 25 and 27. today we were told by UCLA that with a 25 they may start making us offers. which means the supply and demand might be lower at this moment so we could get a transplant at MELD score of 25. we don't know exactly what she meant by "making us offers", and we thought the Chief of Liver Transplant stuff was going to be "selecting" the best liver for Mark, not really like us picking it out. so we need to find out how this is going to happen. as everyone knows we are learning as we go. its like once it happens then you are the expert, until then we are on the learn as you go program. we are both definetly freaked out a bit with this new info. we were thinking it was going to be more like this Fall, and now we are realizing it could be sooner. okay that is really scary. Mark asked me tonight if we are ready. uh NO. totally scared. not ready. can't we just freeze time just like it is right now? is that option? because right now is safe. we have gotten use to this routine we are in right now. moving forward into unfamiliar terrain AGAIN is crazy scary. hold on everyone we might be moving to the next step with all of this in the near future. do we have choice? no guts no glory, right !? like Nike says JUST DO IT!!!

Monday, April 6, 2009

Its Jenna logged in as Mark

OMG i really suck at updating the blog. i think i just got bored of our own story. like everyone was ok yea we get it. the cancer, the oncology appointments, the ct scans, ... i have trouble keeping up with it all myself. like i think we are on cancer auto-pilot mode. just please steer us to the next step so we can hurdle it successfully. okay sweet, mission accomplished. NEXT... okay phew we dodged that bullet, figured out that insurance snafoo, ooops we accidentally tossed out a $350 full bottle of chemo pills when we cleaned our pantry (true story and yes i cried i was so mad!), ok order new bottle... check that off the list. and ok yuckie its time for that dreaded scan where Mark can't be around the baby for 5 very long days... OK no problem, make many plans to be at my mom's house that week. a lil' wine and some of Diane's lasagna and I am back on track. Phewie. its like i have gotten too good at dodging the bullets, manuevering this whole situation that when i do stop to reflect, I get scared out of my mind. if someone told me the story of me, i'd be like ohhhh that poor woman how does she do it. mmmm my secret ... at least one cute top per week from Forever21 (retail therapy when used in moderation is amazing) and my girlfriends. these poor women have heard me recount this situation over and over in great detail.... and most importantly Mark is my strength. because really his strength amazes me. And i just want him and Jonathan to be proud of me and know that I am doing the best I can. when i pause and think what if i were the one with this disease i completely freak out, i really have zero clue how he pulls it together. I look up to him.

Thanks for reading my ramble.

Peace out,

Wednesday, February 4, 2009

Still On The Transplant List:

It has been quite some time since we have updated the blog right? Well no excuses here, I'm just lazy. But on the bright side, there will be lots of interesting things to talk about, won't there?

We have just finished up another round of tests to see if the cancer has spread and make sure I am still a candidate for liver transplant. This was a couple of tests ordered by the UNOS group, the people who decide who gets new parts and who doesn't. The tests both came out good. The CT scan showed no signs of growth. The other test was the dreaded Octreotide Scan which makes me radioactive for almost a week. Luckily we were able to schedule that test to coincide with my going to Arizona for my Dad's knee replacement surgery. That test also showed no signs of spread. They also said there was less uptake of the chem in the tumors which, as far as I can tell, is a good thing. So with these positive results, I am still on the transplant list with a score of 22. In three months I will be taking these test again. At that time, if all is good, they will be increasing my score to 25. Right now, at UCLA, they are transplanting livers for people with scores of 25 to 27. They still expect I won't receive mine until another nine months or so from now.

When this whole thing began, and we started looking at the possibility of a liver transplant, they told us about the possibility of doing a living donor (LD) transplant instead of a cadaver. At the time, I really didn't like the idea of that, and I'm not even going to try to explain to you why. Recently though we have started to re-evaluate this possibility. UCLA has a policy of only considering LD if the person is from the same family. I asked them why and the response was, "Our general policy is that it is family due to the extreme invasiveness of the procedure and the psych aspects". Although I think they would make exceptions. But not only does it need to be family, you of course have to be the same blood type.

Sarah, my sister, came to me recently and said she really wanted to be my donor. She got her blood tested and it turned out she was O+ like me. We called my coordinator and she got Sarah in touch with her own Coordinator to start the process of evaluation. Holly crap!! The idea of getting part of Sarah's liver is very exciting. We are both very excited about it. I have looked into statistics a bit and it looks like people who have LD's vs. Cadaver's livers typically do better. So that's cool.

Sarah spoke to her coordinator today and there is some question as to whether her liver is going to be big enough for me. I am quite a bit bigger then her. They are talking to the Surgeon to find out what he thinks.

Whether or not this works out, I can't help but feel lucky. Not only did Sarah offer to do this for me, but everyone else in my family did also. I am a very lucky person to have such a great family. And that is the biggest understatement of this blog. I can't tell you how much they mean to me.

On another note, my Dad is doing great after his surgery. The day I left, he was actually able to get out of a chair and into his bed on this own! Wow!!! I am really proud of him and his determination to get better so he can be with me during my surgery. Seeing him in the hospital has also helped me be less scared about what is coming up for me in the near future.