Tough Decisions

I'm so sorry I haven't posted in 12 days.  Today I had another round of Aredia treatment for my bones.  I had nurse Mary Ann.  She is another nurse that I haven't had too many times but none the less very nice.  All of the chemo nurses hold a special place in my heart and I love walking into the infusion center being greeted by all the nurses.  Aredia only takes an hour long and afterwards Mary Ann gave me the flu shot.  I cannot afford to get sick so I opted to get one this year.  I went to my appointment a little late because I had an appointment first with my LCSW, Joji.  I hadn't met with him in a couple of weeks and some important things are going on with my treatment and I just had to vent it out to someone who really understands me.

Sitting in the Aredia chair.

Last Friday, the 5th, I had my 3rd cycle of Taxol.  On Thursday I had met with Dr. R and we spoke briefly about where we were at with treatment.  It was now time to schedule my PET scan and there were questions of what if.  What if Taxol is working and shrinking or making my cancer stable?  Did I want to continue it?  What if Taxol is not working and my cancer is growing?  Did I want to try a different type of chemo?  The thing about Taxol, is that it only has a 15-24% chance of working for me.  When I first started my journey, my first chemotherapy, Epirubicin/Cisplatin/Xeloda, had a 40-60% of working for me and Dr. R felt that I had a good chance of responding well to it.  And she was right.  After 3 cycles of ECX, we did a PET and it revealed that my cancer was shrinking.   The side effects were very minimal and I was excited.  We continued with ECX since it was working for me but suddenly in late May, I started to get sick and the side effects really started to kick in.  Dr. R ordered a CT scan in June and it revealed that my cancer was growing.  We went ahead and continued on ECX but in my heart I just felt that it wasn't working.  I was constantly suffering from nausea and vomiting.  Finally in August, my second PET scan revealed that ECX was indeed not working and my cancer was growing.  Dr. R asked me if I wanted to continued chemo but with Taxol this time and without hesitation, I told her yes.  Seven weeks ago is when I started my treatment of Taxol.  I knew my hair would be falling out again but that wasn't a big deal.  I figured that I couldn't possibly feel any worse than I already had from side effects of chemo but I was wrong.   Taxol has made me feel HORRIBLE. A couple of days after infusion is when the side effects kick in.  Luckily they only last about 4-5 days but they are a long 4-5 days.  I literally feel like my body has been processed by a car crusher.  There were so many days when I would cry that I couldn't take it anymore.  Somehow I made it through.  Shortly after I started my first cycle of Taxol, I realized that I hadn't asked my oncologist what were my chances of Taxol working for me and I emailed her asking her.  I didn't realize that my odds had dropped significantly and with how Taxol was making me feel, I didn't know if I could keep going.  I had only revealed to my family and a few close friends what I was facing.  I know 15-24% isn't much but I was holding onto hope.  I still hold on to hope.  You might be thinking that most likely, Taxol isn't going to help me and I just put my body through hell for nothing.  I might have lost my hair for nothing.  I go in for my next PET scan on October 23rd and I meet with Dr. R on the 25th where she will go over the results with me.  I am holding onto that hope that at the very least, Taxol is making my cancer stable.  I am hoping for no growth.  But I have to be honest.  Part of me doesn't want Taxol to work.  If it does work, do I continue on it?  Of course, you would think.  Can I really endure feeling like hell again? This is not the quality of life that I signed up for.  Dr. R said that we can try another chemotherapy but that my chances would drop even lower.  I gave Dr. R my initial feelings but after talking over the situation with nurse Paula, I decided to make my final decision when we cross that bridge.  This decision is mine and mine alone.  This is about what I want and how I want to live my life.  Initially when I was diagnosed, we were hoping to get a good 1.5-2 years more of life.  But as I have learned about stomach cancer, it can be very sneaky and aggressive as mine has shown to be.  I am only 9 months into my journey and unfortunately, I will not make it to the 2 year mark.  That's just the reality of it and I want to be honest with all of you about this.  I do not focus on expiration dates and no doctor can tell me how much time I have left.  Yes, I have asked Dr. R what her professional opinion is on how much time I have left but I have decided to keep that private between myself, my family, and a few close friends.  I do believe that only God knows when he will call me up and he has a plan for me.  I am very trusting in him.  After all, without his strength carrying me through this journey, who knows how long I would have lasted without it.

Where I spend most my days.

Right hand swollen but not the left, possibly a blood clot.

At the end of August, I was still feeling pretty well and doing things for myself.  It wasn't until I got my Pleur-X catheter that things started to turn for the worse.  That's when I knew that my health was steadily declining.  I am now up to 4 visits a week from my home health care nurses.  This means they are draining a liter out of my pleural cavity 4 times a week.  That's 4 liters.  And there is plenty of more fluid where it came from.  Luckily my belly fluid hasn't been a problem for me anymore and I haven't needed another paracentesis.  Lasix does a pretty good job working for me, although I have to admit that it's quite annoying going to the bathroom every 5 minutes when I do take it.  My energy level is gone.  I can't bend over very far without coughing up a lung.  My mom has to open my dresser drawers for me to find my clothes because it takes too much energy on my part.  I am pretty much on oxygen 24/7 now.   I only shower 2-3 times a week because it drains me and I can't stand to be away from my oxygen that long.  I no longer wear make up as it takes to much effort.  I can't even imagine wearing a dress anymore.  Taxol has made me experience neuropathy, which is numbing/tingling of the fingers and toes.  Mine feel like ice cubes, numb.  I'm not in any pain.  I'm wearing my fentanyl patch and taking dilaudid for break through pain.  Most of the time I just want to take Ativan (which knocks me out) and sleep the day off. I mostly feel uncomfortable.  I feel a weight on my chest which is the fluid in my pleural cavity.  I hate it.  It makes me feel short of breath.  Oxygen doesn't even help much.  My heart races and it's the oxygen that helps me catch it.   I have a slight cough that I don't know will ever go away.  I'm pretty much homebound because it takes too much effort to leave.  And again, I just don't feel comfortable.  I am trying to do better with my crankiness.  I think I just get irritated when I have to repeat myself because I'm short of breath and hate wasting it!

On a good day, nail shop with my sis.

I am not telling you all of this to feel sorry for me that I'm not doing well.  I just want you to know what my reality is.  My cancer has not been good to me at all.  I appreciate all the prayers and well wishes.  Keep sending them my way.   I have some pretty tough decisions coming up this month.  Maybe I'm next in line for a miracle.  Whatever I chose, I want you to know this:

"I've realize that I will never lose my battle against cancer. Although there is no cure and I will earn my wings one day, filling my life with beautiful people and experiences makes me a winner. I love my family, friends, and supporters dearly. Thank you all for helping me create a life worth living when it matters the most."

Closest thing to being a mom.  Love Molly dearly.

Happiest People for Happiest Place on Earth!

This photo is for nurse Paula.  This past weekend, I did my own create a wish and went to Disneyland for a day.  In all, there was a group of 12 of us.  My cousin's-daughter's-mother's-cousin, Hugo, works at Disneyland and was able to join us and host us. He works the night shift and had just gotten off but he generously took us around the park and gave us the tour.  Our first stop, after getting mouse ears, was at City Hall where they gave us "honorary citizen" buttons which would allow us to be accommodated at the lines for the rides we wanted to get on.  I proudly wore my head bald with just my ears and sometimes I had to take a break since my scalp would get warm.  Tolerance still needs to be worked on as I still got plenty of stares from everyone (kids and adults).  Most people were kind enough to move out of my way as I was in a wheelchair and even generous enough to move aside when a group would crowd around a performance and I couldn't see from where I was at.  

This is a short lil blog to let you know I had a wonderful time at Disneyland and I couldn't thank Hugo enough for taking time out of his day to give me and my family a wonder Disney experience.  What I've learned is that Disney is a huge money maker and they don't do anything special for people in my situation so it really does take kind hearted individuals like Hugo to get a true Disney experience.  I will forever be grateful for him and what he did for me.  

More to come so stay tuned!

Mickey Here I Come!

I just wanted to write an update about something exciting I have to look forward to.  Today my sister, her husband, and her friend are arriving from Seattle.  I love having my family visit.  But what makes this extra special is that we are going to drive down to LA this weekend and go to Disneyland!  My oldest brother has been endlessly fundraising for me back in our hometown of Othello, WA.  My friend Rachel sent me the flyer they are using and she is in on the fundraising, too.  It absolutely touched my heart.  This trip is my own create a wish.  I've opted not to use The Dream Foundation.  Because of my declining health and my lack of ability to travel, I asked my oncologist if it would be ok for me to do this trip and she gave me the thumbs up.  Fundraising has made this trip possible but also it's helping my medical costs.  I am on oxygen 24/7 and it isn't cheap.  I just gave my debit card number to Apria Healthcare and they just charge me my monthly copays for the wheelchair, hospital bed, and oxygen.  It has been adding up.  I absolutely appreciate everyone that has donated to help me out.  I am forever grateful.

Fundraiser back home.

This week has been pretty uneventful.  I still have this weird cough which won't go away.  I have no fever or anything, it just brings up a clear phlegm.  It's very annoying because if it gets out of control, it does make me vomit.  I spend most of my days in my room either sleeping or on my computer.  Finally yesterday, nurse Paula gave me a good pep talk after I broke down to her.  She is the sweetest thing ever.  She encouraged me to get out of the apartment in my wheelchair and just get some fresh air.  She told me that I wasn't at a point where I was to be confined to my bed.  So later that evening, I took my oxygen tank with me and my mom and I walked over to Trader Joe's to grab something for dinner.  I live right behind the store.  I took it slow and had to take a break outside on the benches, but we made it.  My appetite has been non existent and nothing jumped out at me while in the store but I just picked out something that was half decent looking.  I'm glad Paula gave me the motivation to get out but next time I am taking the wheelchair.  I am just too winded walking by myself even with the oxygen.  My mood has also been somewhat grumpy.  My sister has been taking care of Power of Attorney stuff and I guess it's making me feel upset inside.  I know that it has to be done but I just feel like I'm very much alive and well and kicking.  Things need to go at my pace and I'm not ready to sign off on it.  Maybe I just don't want to deal with the fact that I won't be here one day when I'm trying so hard to stay alive. 

Posing with my oxygen tank.

Today I went to Kaiser to get my dressing changed on my midline.  I took a couple of pictures in the lobby area as I waited for nurse Cynthia to call me back.  I decided I'm going to give my oxygen tank a name so I'm taking suggestions.  

Just saying hello!

I also got my nifty purple wig in the mail.  I quickly brushed her out and snapped a pic.  I really like it!  If I dolled myself up with make up, I'm sure to look like a super star!

I love my new purple wig!

I hope everyone has a great weekend.  I will make sure to take lots of pics and hopefully I meet plenty of the Disney characters.  Please send me your prayers and positive vibes that I survive this trip without any troubles.  Thank you so much!

Throwback: Summer of 1999 (17 year old Marta)

Throwback:  1982?  That's baby Marta on the blanket.