Final Pet Scan Results

Again, my sincere apologies for taking a while in updating my blog.  I am much better at updating my Team page on Facebook.  But anyways, I had what will be my final PET scan on October 23rd.  Usual routine occurred where I had to fast and that was torture on my body because I was actually hungry and my appointment was at 2:30pm in Santa Clara.  My family took me to my appointment and at this point, I am using a wheelchair and oxygen.  It's just less stress on my body so why not use the wheelchair.   My sister checks me in and at 2:30pm, the nice tech, Lori, wheels me on out back to the room where she will inject me with radioactive material.  First off, she checks my blood sugar level which is at 99 and we are able to proceed.  I haven't been able to take my cough syrup with codeine in it because of the sugar and so I'm carrying around a garbage bag and box of tissues so I can spit up into something.  Lori injects a radioactive substance into my midline and then I rest in the room with the lights out for about 50 some odd minutes.  She had covered me with warm blankets and I try to get as comfortable as possible on the hospital bed and take a nap.

The next thing I know, a different male tech comes into the room and takes me back to where the PET scan machines are.  First stop, I must try and empty my bladder.  After that, he takes me to my machine where he removes my glasses, straps me down, covers me with warm blankets and then proceeds to tell me to be still for about 20 minutes.  I'm concerned because I'm still coughing like crazy but he said that I can cough, I just can't move my hands to cover my mouth.  I have been practicing mediation and controlling my breathing so this is where those techniques were really going to come in.  The Pet scan is over before I know it and the tech checks my pictures before releasing me.  Everything looks good and I'm free to go.

I don't like going out much.  I'm just too uncomfortable.  Even though I'm getting my pleural cavity drained 4x a week and using Lasix to also rid my body of as much fluid as possible, I just really hate it. My next appointment is on Thursday, October 25th, where I will meet with Dr. R.  She will reveal my PET scan results and she had a good idea of which way I am leaning towards.  That morning, I take my Lasix as prescribed and I'm feeling a little anxious for my PET scan results so I take 1/2 an Ativan to calm me down and to also calm my coughing down.  I just want to sleep until my appointment later that afternoon.  Now this can be a dangerous combination.  Lasix will make me go to the bathroom every 5 minutes and Ativan will knock me out, therefore I have to be careful when making my way to the bathroom or to use the commode in my room.  I kept getting text messages from friends that they were thinking about me and to please let them know my results as soon as I get them.  I was also checking my Facebook and was getting personal messages about how was I doing and did I know what my results were yet.  I started to get a little annoyed by my phone going off with text messages of this and I hadn't even gone to the doctor yet!  At one point, I'm half asleep and I get up to use the commode in my room which is literally two feet away from my bed and I'm just so disoriented and nervous that I just fall.  I didn't trip on anything.  I just couldn't take it anymore.  I guess I must have made a loud thud because my mom comes rushing into my room and tells my sister (we'll refer to her as sister #4), that I have fallen.  My sister rushes in and I lay there. I start to cry.  I explain that I didn't trip or lose consciousness, it was just the nerves.  They help me up and I use my commode.  I felt horrible because I could see the tears in their eyes.  I just needed people to back off.  My appointment for my PET scan results wasn't until 2pm and on top of that, I have 8 siblings and my 2 parents to tell first.  I make myself back into my bed where I continuously use my commode every so often and I just put my phone on silence.

At about 1pm, my mom helps me pick out what I'm going to wear and I take a shower.  We take the oxygen tank down to the car and drive on over to Kaiser.  I ask my sis to grab me a wheel chair and we head on over to my appointment where she helps me check in.  My energy level is low and I wait for the medical assistant to call me back.  Latishma checks my vitals and it looks like I've gained about 8 lbs since I last saw Dr. R.  Dr. R comes into the waiting room where my sister and I are waiting for her.  Dr. R tells me that I was right again.  My cancer is active and growing.  My pelvic tumor remains the same size but it does show that it is active.  I am also showing new cancer growth in my right humerus bone.  She then asked me how I would like to proceed.  She knows that I am tired of putting myself through chemotherapy when it is not working for me.  That's just the gamble you take with chemotherapy because it's not guaranteed to work. I ask her if she agrees that hospice is my best choice at this point since choosing another chemo would lower my chances even more of it working and she does.  Dr. R knows that I want the best quality of life and proceeding with treatment is not going to give me that.  Since I am no longer even going to receive Aredia treatments, Dr. R tells me that the chemo nurses can pull my midline after our appointment.  There is a sigh of relief on my part because it's always been a pain in the butt covering my arm to shower.

And there you have it.  I am now a hospice patient.  I did ask Dr. R what her professional opinion was in terms of how much time I have left but I feel that that information is very private so I will keep that between myself and my family.  Besides, you all know that I feel only God knows when my time is up.  We went over what any other questions I had and then she asked me if I needed any refills on medications.  Afterwards, we wait for Dr. R at the medical assistants station as she is getting some paperwork for me ready and also we are figuring out who is going to pull out my midline catheter where.  Latishma leads me back in the same exam room for this tiny little procedure. When I was in the exam room getting my midline taken out by nurse Gail, I didn't watch and it didn't hurt which was a surprise to me.  A couple of the other chemo nurses came into the room and tears just flowed from my eyes.  These women have taken care of me since January and here I was telling them that I was choosing hospice.  I hated saying goodbye.  I couldn't thank them enough for everything that they have done for me.  I think that's what hurt my heart so much.  I have developed a great relationship with everyone in oncology and here I was saying goodbye to as many faces as I could and I wasn't ready for it.   Definitely not a good day for me.  As soon as we left Kaiser, I just went back to sleep when we got home.  As much as I had prepared myself for the worst results possible, because I know that stomach cancer can be very aggressive and mine has shown me that it has been, it's never easy knowing that you're so much closer to the end of your journey.  I had that little glimmer of hope that my PET scan results would come back at least stable and it was all starting to fade.  But now it was time to start my journey on hospice and I knew that it wasn't a death sentence.  In addition to talking to my LCSW, Joji, about what the hospice program is, Kaiser had also sent out another social worker to talk to me about hospice and she answered all my questions, putting my mind at ease.  Hospice is typically for patients not choosing treatment that have a prognosis under 6 months.   They have nurses that come out and will make you as comfortable as possible.  They are also accessible 24 hours a day.

My family stands by my decision to choose hospice and they respect it.  They do not want to see me miserable and agree that creating the best quality of life is I can is my best option.  I know that by choosing chemo again, I would have to endure side effects and it was most likely not going to work for me.  That's just how the game works.  Dr. R told me in the beginning that chemo would buy me time but that we would get to a point where it just wouldn't work for me anymore.  I really wish that I could change these things but I can't.  My initial prognosis was two years at best and I figured with my age and positive attitude, I had time.  But this cancer has a mind of it's own and I apparently got the sneaky, aggressive kind.  I have no doubt that my oncologist did her best to treat me.  I will forever be grateful for her and her team.

So where does that leave me?  I am feeling ok right now.  I know that in my last posting, I wasn't doing too well but I figured out that if I stay on top of my pain medication and really talk to my nurses about how my body is retaining fluid, then I start to feel better.  There are some major changes coming into my life in the next couple of days that I can't reveal just yet.  In the meantime, I've focused on creating a peaceful environment at home and having talks with God.  I want to be ok with how things played out here on Earth and I don't want to be angry at anyone.   I have had such an overwhelming amount of support on my Team Marta page on Facebook.  They pick me up when I am down and interact with me when I just feel like I need to talk.

One thing that I did want to address is respecting my choice to choose hospice.  This means that I am not open to any clinical trials, Gerson Therapy, Magic Cancer Curing Trees, etc.  As a cancer patient, it's almost like a slap in the face telling me that I'm not trying hard enough to get better and that I'm giving up.  That is not the case.  I was never guaranteed to be cured when I was diagnosed and this is just how my story goes.  I know that when people email me regarding the cure for cancer that they have the best intentions but it really does hurt my feelings.  I know that there are a lot of scams out there and I've done my research.  I'm very comfortable with the decisions that I've made and this is MY journey.

Sorry there are no pictures.  My main priority is to try and feel as good as possible and I am very grateful that I  have caretakers that really help me out.  I have a few friends that help me out with my Team page and then I have my sister that has been helping me out with mailing out my Team Marta wristbands and also my doll project (which I am actually discontinuing).  Things are just getting harder and harder for me to do so it might take me a while to respond to emails or requests.  I plan on fighting this beast until the wheels fall out and if that means I need a few helpers along the way, then so be it.  Hopefully my next update doesn't take me as long to post but I do plan on taking you all the way to the end.  I hope you are all happy and healthy.

Much love,
Marta

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!