Thursday, November 8, 2012

I'm Coming Home

If things have gone according to plan, right now I am taking off from SFO on a Virgin American flight up to Seattle.  I have decided to completely relocated from the Bay Area to live my final days out with my family up in Seattle.  I decided not to announce this ahead of time because I didn't want to deal with setting up time with people to say goodbye and deal with those emotions.  Seriously, only a handful of people knew that I would be moving.  I'm flying out tonight, Thursday, with my mom and caretakers and kitties.  Saturday, my brothers and brother-in-law will be in the Bay Area to drive the Uhaul and my Honda up to Seattle.  I will be transferring hospice care up to Seattle and meeting with my new oncologist on Friday.  I am so sad to have to say goodbye to my old oncologist, chemo nurses, and home health care nurses like Paula and Nancy.  They have had a tremendous impact on my life and will never know how much they mean to me.  Part of my final wishes are to spent my last few months with my family and I'm just making that happen.  Although the few friends that have supported me through my entire journey will no longer be able to just jump in the car and visit me, I am only a 2 hour plane ride away now.  I will continue to update everyone on my Team page via Facebook to see how I'm doing and try to get on my blog also.  If it does come to a point where I cannot do updates myself, I will ask one of my sisters to guest blog for me to let you know how I am.  Ultimately, the final moments of my journey will be extremely private and I will leave it up to my family on just how much they wish to disclose.

I hope you all understand my desire to relocate to my home state and no one takes it personal as to why I did not announce this sooner.  I moved to the Bay back in 2001 with the intentions of hanging out for a year and I ended up liking it so much that I stayed.  It had always been my goal to get married and stay here but things didn't work out that way.

As of November 9th, 2012, I will no longer be in my apartment in San Mateo, CA.  I will be safe and sound in Seattle.  While I will have my mail forwarded, please do not stop by my apartment or send me mail to that address. Should my miracle arrive, I will rebuild my life in Seattle and start over there.

Much love,
Marta

Monday, November 5, 2012

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