Jelly Belly!

Well, not exactly jelly, but my tummy is quite swollen and firm.  The oncologist was excited that the fluid is drying up, but the belly is not any smaller.  That is the nature of Peritoneal Cancer.

The peritoneum is the very thin moist skin that covers the inside of your abdomen and all of your internal organ.  It is all slippery so that your organs can move effortlessly into place as you move.   The lymph run through the peritoneum to help moisturize it.  If your lymph nodes are clogged then the peritoneum is not properly moisturized.  Well, my cancer is very much peritoneal & lymphatic at this point, along with other tumors.  But it is this cancer that is causing me such sickening pain.  It prevents me from being able to eat a normal portion of food and then makes me want to throw that up.

Don't look at the internet about this kind of cancer.  It says that there is a 100% morbidity rate.  Well, I think that is what the doctors mean when they keep telling me that there is no cure for me.  The internet gives me 12 - 18 months to live.

That's o.k. because the internet and the doctors are not GOD.  Last time I checked God is in control of my life.  I still surprise the doctors with my attitude (becoming more of a struggle) and my mobility.  I remain happy most of the time.  I am never depressed.  I cry every now and then because the pain becomes more than I can handle.  But really, I am o.k.

I still feel blessed that God chose me to take this on.  I do feel very special in that respect.

I wonder how people handle things like this without God.

Some Like It Hot!

I surely do not like it hot.  I have had a low fever on and off all weekend.  By low, I mean that it has been just over 100 degrees.  This low fever has nocked me off of my feet.  The pain has increased a bit and I have had all of the symptoms of a fever...chills, skin hurts, etc.

I am o.k.  I have got to stop thinking about the fact that this chemo can stop working at any time.  Any set back makes me think about it.  I believe in self fulfilling prophecy.  If you keep think about negative things then negative things are allowed in your life.

I try to stay positive and focus on God.  I am still happy every day.

Why All of This Fluid?

One of my biggest challenges with this cancer has been the fluid build up.  After draining the abdomen twice the doctors decided on a permanent port that I would drain at home.  It stayed in for two months until it got infected.  Because of the infection the scars are worse than any of the others that I have.

I ask the doctors why I have so much fluid in my belly and they give me a few reasons:
- The cancer that I have leaks fluid
- The body builds up fluid to protect itself

This time around with this recurrence of cancer, my lungs have been filling up.  After the doctor has drained a liter of fluid off of both lungs twice, he stated that he would have to put a port under each arm so that I could drain at home.  But thank God the chemo has helped the fluid remain stable at about half full.

I asked the doctor why I have so much fluid build up in my lungs this time.  He said that there are three reasons that I have fluid:
-The cancer is leaking fluid
- The fluid in the abdomen is looking for more room and leaks into my chest wall and eventually into my lungs
- The lymph system is unable to do its job and move the fluid because the cancer in my lymph nodes is clogging my lymph system.

I Forgot To Tell You About Mother's Day

I have to tell you that my time with my daughter is more precious with each passing day.  We soak up every little second and look for the joy in our time together.  A gift from my daughter does not have to be anything monetary or physical.

We went to our favorite little food truck, Nalu's, for some of the best fish tacos in the world.  We sat at an old pic-nic table in the parking lot of an old gas station turned "Surf Station" and almost licked the plate clean.

We then stepped over to the other food truck, that has been there for years, and had a snow cone.  She always orders it with half & half with dragon's blood and guava juice.  I get my snow cone different every time.  This time was guava and kiwi.  It was such a treat to sit and enjoy this simple pleasure.

Then we took her 4 X 4 truck down on the beach and watched a dirty old man try to get pictures of us in our bikinis.  Yep!  even with my swollen cancer belly.

It was the best day of my life.  Just sitting there in my favorite place in the world with my favorite person in the world.  Another miracle to praise God for as I continue to struggle with my healing.

Breathabililty!

I am happy to report that in the last two weeks the fluid build up in my lungs has become stable.  Of course, I want improvement, but I will take stable.  This means that I still have some pain in my lungs and some problems breathing and coughing, but it is not getting horrible again.  This also means that the chemo is still working.

With this recurrence of cancer I have had my lungs drained twice.  The pulmonologist threatened to put semi-permanent drains in if the fluid kept building up.  That would mean that I would have tubes under each arm and I would drain the fluid at home.  I had that in my abdomen for two months, earlier this year, and it did not go so well.  I was able to drain the fluid, but the tubes inside of me hurt.  Then the darn thing got infected.

You can't imagine how grateful I am that I am breathing without oxygen, unless I get out and do too much.  Plus, my daughter would trip over my tubes and rip the them right off of my face.  It was a good thing I was not hooked up to life support or she would have ripped the plugs out of the wall.  We laugh about that a lot.

Gotta get your laughs somewhere.  In the mean time, help me thank God that I am stable and keep praying for improvement.  I need some encouragement, right now.

Not Much To Tell Between Chemo!

I hate that I have not updated you all lately.  There is not much to tell these days in between chemo.  I am slowly getting stronger and the pain is very slowly lightening up.  I even went to work a few days over the past few weeks.  Oh! everyone fusses at me, but I am going to do just what I want to do.

It was so good to see my team.  Some of them talk very openly with me and others sense that I am going to break down in tears if they look at me.  It does not mean that one person means more to me than the other, it is just that we have different kinds of relationships.  I love all of them so much.

They treated me like nothing had changed and I was back in the swing of things feeling normal and productive...until about 4:30pm when the pain started and I could barely make it to the car.

When this past Tuesday's chemo wears off I am going to give it a shot again for a few days in the office.

Hospice!???

My daughter and I met with Hospice.  I may not need them for years, but the way I have been feeling the past several months, I really wanted them in my life.  I am slightly improving everyday.  Well....some days are two steps forward and some days are way more than just one step back.

At any rate...I am all set up and know the plan with hopice.  There are forms that my doctor has to sign when the time comes closer.  Please do not read into this that I want to die.  Or that I am setting myself up for self fulfilling profecy.  My daughter and I just have a lot of questions and if I get it all set up it will take any guilt out of it for her and my sister.  They know exactly what my wishes are and that I don't want to die at home.  I want to pass like my father did in a wonderful clean and private hospice facility.

All of this may sound morbid to you.  But Hospice told me that it is usually the family scrambling last minute.  They are very supportive of how I am doing this and that really makes me feel better.