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!

-Mark

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 :)

Jenna

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!!!

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,
Jenna

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.

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.

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.