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,