Drain Successful and a Permanent One Installed

  With a little of patience, on December 21, at 11:30 AM, I was quickly, with hardly any wait time, I was quickly registered and admitted to my drain started. My, what a big difference it makes between a community based hospital vs a college university based hospital service difference! After preparation, radiologist nurses was able to get a drained installed and about 2 liters of fluid got drained within the time the time they explained; which was about 3 hours time. It was a pretty smooth, successful process!  I did experience a little a pitch of pain here and there since they only applied local anesthesia, but they did adjust more local pain anesthesia to the spot where they installing the drain tube.
   Overall, after this process, I felt much better after this permanent drain tube was done and left me pain free for the time being. I am satisfied with a drained installed and felt assured this was the right choice to be done so that it's a much easier tasks for hospice nurses to help me drain and access at home.
  However, after a few hours of pain free relief, my pain where they installed the drained, started to resumed and I was back to having to endure more pain around the clock, chronic pain. 
   With this rise in pain discomfort, my pain medications dosage increased. 

    

Region Medical Hospital- Lots of Waiting

    Approximately a month later after radiologists at Stanford drained about 2 liters of fluid from my stomach, I felt discomfort and more pain as my tummy felt dissented and more bloated where I couldn't eat much at all, I felt a drainage was needed.  So, after much complaints to hospice nurses that I needed a drainage to be done, they finally arranged for an appointment for me to get drained. So on December 13, the doctors at hospice arranged an appointment to go to San Jose's Regional Hospital ER to get my drained completed. 
    We arrived timely and got my vitals completed and were told to wait outside for a room for the Dr to complete the drain.  Fast forward to 3 to 4 hours of waiting (augh!), we finally saw two doctors. The 2 doctors viewed my stomach through an ultra sound and stated that the fluid build up was premature. There was too little fluid to do anything at the moment and that the risks for infections were too high to do a drain.  Disappointment overcame me and I couldn't fathom why they seemed to state that when obviously my stomach looked very big and dissented from fluid build up.  I convince them to re-evaluate again and still, after a second look, they maintained their stance that it was still way too risky and that it was safer to have a of team radiologists install a permanent drainage rather than them do a drain.  
   So, with half a day's wasted waiting around, I left with emptied participation of a drainage. 
   However, during the 3- 4 hours of waiting around, with frustration boiling, I called Stanford to speak with my nurse practitioner; I told her of my ordeal here at Regional Hospital of rejection or the undue risks doctors in ER here were unwilling to take to complete my drainage.  Thus, she offered to plan an appointment for next week to ensure that she can get one completed for me. So, call it a nice constellation, my disappointment lead me to believe that with a bit of patience, there's still hope that I can still get this drainage done in fact by a more, professional team of doctors. Hugs.
  

My Dec 8th,42th Birthday Celebration

    Usually, my birthday is celebrated quietly with my husband cooking something special for dinner like crab or seafood at home or we go to a favorite local restaurant. Like the last couple of year's, we went to eat out at Bennihana's. This year, what was extra special was we celebrated like 3 times.  At first we went to have dinner with my small group of family and friends. The second time was with my co-workers for lunch and thirdly, we celebrated it with a big party who my friend, Bao Chau helped organized and hosted.  The dinner was at a fancy steak restaurant in Los Gatos Grill, the second was a lunch get-together with my work colleagues at a nearby home local sushi restaurant and the third was at my friend's home. All three events were so enjoyable and the food were fantastic.  

  It was really nice to catch up with the group I worked with and having great conversations with friends and family closer up at both the dinner and party.  I've attached a few pictures for your viewing.

Below are pictures of me in a white jacket and with me in a blue sweater sitting next to my good friend, Ramona at my Birthday party.  Enjoy! 
    I really had a great time with everyone! Thanks to everyone for taking me out! And great, big hugs goes to out my best friend and sister, Karen as well as Bau Chau for hosting and planning my Birthday party! It was a fabulous, fun filled packed with such delicious food!!  Lots of love, Fawn.

Hospice Care

    So the day that I was supposed to get my 3rd round of Alimpta chemo infusion, even though my blood labs were good, Dr. Neal, on Friday December 2, 2016, advised, based on my health condition that my stomach pain increased, my inability to keep food down, vomiting and fatigue as well as insomnia, and me heading back into ER and being admitted into the Stanford hospital for the second time for fluid pleurodesis from my stomach, that it was time for me to be placed under hospice care. We talked about me taking taking time off to spend quality of time with my family and that it was better than having to endure side effects and pain of chemo.  He cried, the entire team one by one came in, from nurses to staff hugged me and cried.  They assured me that once and if I feel better, I can always call back and tell him that I'm feeling much better and that I was ready to get treatment again.  My brother Hon and his wife, Nary have been such a big help driving me and taking on shifts from my hubby to take over my ER/hospitalization visits and visiting every night since I've been in and out at the hospital the past month. In total I have stayed in the Stanford Hospital at first for 9 days and a week later, admitted back in the following week for complications from fluid buildup for an additional 4 days. During the 2 hospitalizations, I had my brothers and friends come by to visit almost every day to povide support and love. Thank you for coming by to visit, bringing bouquet of flowers, food and Bubba drinks. Thanks to my sister Veronica for bringing me alternative/herbal medication as well as Alvin and Tam for their endless love and support. Thanks to my mom to come to visit me at home almost on a daily basis to cook for me and praying for me. My Mom cried a lot when she found out that I'm on hospice, but keeps up prayers and hope for me to be alive as long as possible.
    So, it's been 2 weeks since I've been on hospice care and it's been nice staying at home to recuperate and getting much needed rests and recuperation from the endoscopy surgeries.  I must be honest, I can be only be grateful for the past 5 years, 10 months that I've been given to survive this stage 4 lung cancer when originally my prognosis was 2 to 6 months to live.  The past month's pain was so unbearable that I knew my body was breaking down and the my body was slowly nearing the end of life.    I am very sadden to hear this news of end of treatment and that death is pending soon. But I have accepted my inevitable upcoming death.  I have accepted that I am in the process of dying and I hope for a peaceful death.    At first, when I was admitted into the hospital, I thought it would up to only a few days and that I would be released.  However, the recovery process ended taking much more.  Initially I had planned to go back to work right before Thanksgiving to work, but it turned that was not possible with my declining to health. Hence, I had to submit my claim for a short disability leave.  So, as was told from Dr. Neal, with tears and hugs from him, he nicely also conference called my hubby, my brother Alvin and Hon over the phone, he again, repeated the news to them about me entering hospice effective immediately and that I am in declining health and treatment will end.  He said it time I consider quality of life instead of suffering more agony and chemo harsh side effects of treatment.   It's been 2 weeks since I've been on hospice care and I am in a good place to have 24/7 care where a nurse comes to check on me twice per week and comes as needed.  In addition, they have delivered a hospital bed, a table, a handy wheel chair and a walker. They've have increased my level of pain medication dosage as needed to keep me comfortable and pain free.    I hope I do get better each day since I am praying hard to keep life going for my kids, family and friends.  Life is so precious and I hope to be alive for a long while longer.  Please pray for me and keep me and my family in your thoughts.  I love you all for following my blog and your support.Lots of hugs, Fawn.  

It's been 2 and a half year since I last posted

Hello, again, I know it's been such a long since my last update. I'll try to catch everyone up.  Fast forward to almost 2.5 years forward, since then, due to a T2 spine progression where I had some tumors grew while I was on the LDK or Zykadia trial, after  a cycle or 2 of Cyber-knife targeted radiation, Dr. Neal switched me to the new FDA drug in pill form called Alecensa (alectinib) that was approved on Dec 11, 2015.
When taken after a meal, it was supposed to be less intestinal pain and cramping.  I've read how others on Inspire.com who were patients responded and they all pretty much liked it better than LDK.  As soon as I received in the mail, I took it and it was easier on my stomach to take. I tolerated it pretty well, although I'd still get get some stomach issues, it wasn't too bad.  
However, results show that in 2 months, after a CT & MRI scan, there was a slight progression in my left lung showing some fluid and some tumors starting to flare up in my stomach lining as well as some small tiny tumors on my brain. Dr. Neal then suggested I my treatment switched me back to Zykdadia (or LDK) since under that pill, I was relatively stable with active growth all 2.5 years!

  But, going back to this Zykadia treatment this time in Oct-Nov 2016, my pain at night started to fire up where I could barely sleep at all. The pain grew each night and my Dr soon prescribed 2 Norcals and Oxycodine for pain. And since I couldn't sleep, a sleep pill as added and 2 types of anti nausea called Zofran and Compazine and  3-4 types of constipation were added (Senna, Collace, Miraleax, and some other liquid medicine including suppository and enema). 
After trying LDK, scans show it was not effective, so Dr. Neal switched me back to Chemotherapy to just Alimpta. 
I had two 2 cycles of Alimpta once a week and ever other week off. Well, within 2 weeks, after it, my hair all started to fall off and pain also grew to be intolerable.  By the third round, some lab results indicate high levels of liver enzymes and bilirubin; which indicated some infection.  So, we were told to rush to Redwood City to get a an ultrasound of my stomach.
  As soon as we were done, on our way home, we received an urgent call to rush to the Stanford ER Department to get myself admitted into the main hospital for further tests and ended up getting admitted in the hospital for 9 days. They determined that I had a an opening in my gall ball bladder as well as some infection in my pancreas. So, a metal plate was installed to close up the opening on my gall bladder and a temporary easy to flush stent was put placed in on left stomach.  
    After wards, complications arose where I lost a lot of blood during the endoscopy that they needed to to do two fluids of blood transfusion to keep me stable.  From there on, I was kept for a few days to monitor how I was doing. It was determined that my stomach lining as well as the lining of my brain tumors (Leptomeningeal enhancement along the inferior frontal lobes) had grew.  This means very bad, devastating news. It means, that my treatment isn't working and I am out of treatment options. I knew it was coming since my pain in my stomach grew more and more unbearable and Dr. Neal had to increase the pain medication to a higher dose.
    With my health declining since chemo doesn't seem to help, and me feeling weak, having intense pain and tumors slowly growing, I am starting to feel, the end is quickly coming. However, I still has a sense of hope to keep fighting and praying for a miracle. So, please keep me in your thoughts too and wish me well.  Hugs.