I had the results of my CT scans read to me last Monday (the 30th) at chemo. MSK compared the CT from the ER to theirs which apparently is a "rough comparison" due to the ER not using Barium and MSK using standard Barium. All CTs of the Abdomen I get use Barium and the ER was such a mess with doctors leaving their shifts and not finishing my scans, I never got Barium and ascites were missed on my CT at the hospital. Due to the tumors in my Abdominal Lining and constipation from being on pain medication, barely moving, and bed bound... the Ascites remained in hiding. The ICU attending finally listened to me and drained my belly twice, but no one thought I would need a drain there. The theory was that my Right Pleural Drain would drain my stomach. This theory was wrong as proven by my CT scans.
The CT scans proved I had ascites and I was being set up for a 3rd Paracentesis at Riverview Medical through Sloan, but this time a drain was going to be placed. I have walked around with an EGG shaped stomach for 60days. I was told to gain weight and it would dissipate, I did. The EGG remained. I was told to eat 75-90g of protein a day due to being insufficient in protein which is why I was also retaining fluid in my feet and lymphedema arm. I have been and my protein has not improved on labs. My labwork is pretty much perfect. My alkaline phosphate is elevated by a lot, but that does not point to any organ failure or something we do not know - Cancer is in my abdomen and on my liver. That number and my tumor markers doubled in-between my 2 outpatient chemos in October. My scans also showed slight growth of the abdominal tumors.
What do you do when there is slight progression? My doctor usually changes chemos. This time we are adding the chemo pill, Xeloda 1,000mg a day for 14days on, 1 week off, to my every three week schedule of Ixempra. She wants to do two rounds and then rescan me.
What is the plan after that? Usually my doctor has one, but right now she thinks I am too sick for a trial. Need to get stronger. She is not sure if there is something she has not tried that I have not had a similar drug to in the past. This is wonderful (sarcasm). Not giving up on me, but running out of options she can think of. This is when I say "F that" and ask for second opinions, I ask my friends on Facebook. I ended up getting into MD-Anderson Cooper to see Dr. Grana thanks to LBBC for calling them for me and helping us see her. We also will be see Dr. Kalinsky at NYP-Columbia, who runs a lot of clinical trials at that sister hospital to NYP-Cornell. Odds are, they have nothing I do not know already.
I know I have had multiple lines of chemotherapy, which limits trials. I have used every anti-hormonal. I have even gone on off label drugs, which failed to work and resulted in rapid progression of my disease. I know my family was told in September that I would not leave the hospital and to get my affairs in order, but I left and I am here. I no longer look like a starvation child. I look like a well fed pregnant with cancer woman. I was told by my doctor that in no way she is giving up on me, but I need to actually start to think about the day where I am going to be off treatment and made comfortable. The word hospice has been said in my presence. Lets just say things look good on one end and bad at the next end and I am a teeter totter either getting a hopeful recovery or going on Hospice and possibly not seeing my 1st wedding anniversary in April or even seeing 2018 with sound mind.
Why am I writing this? Because no blogger does. Some do, but a lot of us do not even want to think that we could be facing the end. I have hope in second opinions. My oxygen and trach prevent me from going far to get them. I would love to go to Dana Farber, but that trip would be huge in winter with a girl who needs oxygen and her trach is still within her.
The trach might be able to come out, when I do not know, before Thanksgiving like I hoped, probably not. We are waiting on getting a night nurse to monitor me for a few weeks off my two hours of sleep I use the manual ventilator and not just me and my oxygen. Kyle nor our parents are medical professionals and we tried it and all got freaked out. We turned to insurance and are waiting for those steps to get put into place. This really is a bunch of paperwork that needs to get send by my Pulmonologist to my Insurance Case Manager, who said last week she will start the ball on that now.
I want to call two more hospitals for second opinions. I know we called NYU and I have to email a friend who knows someone at Dana Farber. NYU said they will call when they get my records from Sloan and Cornell. I have to email my friend about Dana Farber (reminder send email now).
I do not want to accept "comfortability" if I have not given my all to get stronger. I am stronger. I can walk up the stairs easy peasy even after the Pleurodesis I had yesterday. I eat food that will make me gain the weight my doctors ask me to, so I can withstand treatments. I go to every VNA appointment and do whatever they ask... If it will get me better I will do it.
I am not going to give up because of this EGG shape my (great muscular) body has formed into. I will give up when I know I have searched high and low for the answers to make me better and there is nothing nowhere nada zip. Then I am ok with going into that nothingness...nowhere, blackness, zip. For today, I choose light, life, and love.
