Good Question!

My posts bring up some good questions.  So, everyone wants to know why I don't just get the fluid drained from my abdomen.  In fact, I did that twice during the first dance with cancer.  The first time they drained 1 liter and the second time they drained 2 liters.

Here is the problem; when they drain the fluid, it comes back almost immediately and with even more volume than before.  The relief is only temporary.  Another issue with removing the fluid is the removal of very needed protein.

Thus, leaving the fluid alone is best if one can stand the pressure.

I Almost Forgot To Tell You!

Another thing happened a few weeks ago.  One of the beautiful women that work with me has been talking about me to her precious 6 year old daughter.  Her name is Brooke.

Well! Little Miss Brooke showed up in my office with a teddy bear.  It was her Bravery Bear that had been given to her by the hospital for being brave during a recent procedure.  She proudly presented me with her Bravery Bear so that I could be brave through everything that I have to face.

I sat there with tears in my eyes.  We spoke honestly, but vaguely about what I had been through and what I might have to go through.  I then gave her a prize from the toy drawer in my office and she happily went along on her merry way.

When she left my office I cried so hard.  That little soul touched my life in such an amazing way.  I thank God for Brooke and the joy that she brought to me that day.  You must understand that Brooke brought me that bear on the 4-year anniversary of my husbands death.  She did not know that I was facing another Christmas alone and was planning projects to keep me busy and not let my idle mind get all weird about it.

I saw God's Grace in that little face that day.   Thank you, God!

What If The Hard Part Is Living?

Indeed!  It is not easy to make it through life these days.  We have so much social pressure, not to mention the pressure that we put on ourselves to be successful in so many areas of our lives. 

Many cancer survivors find it difficult to get back into the pressure of the real world.  We spend months being pampered by doctors and nurses.  Then when we get home everyone else takes care of us by cooking & cleaning.  So when we are blessed with remission we jump back into that life that we had before. 

That is exactly what I did.  When I read that book "Radical Remissions" I see that an area of my life that I have not changed.  Getting home every night at 8 or 9pm is just not good.  Two hours with Spud (the cat) and then to bed to get up early to do it all over again.  In fact, I did not get home last night until 8pm. 

Hmmm!  Food for thought. 

How Do I Answer These Questions?

I frequently get a questions about how long I think that I will last.  What are your chances?  People are looking for my true gut feeling about all of this.   I talk about this subject frequently on this blog because it comes up daily in my life.  Not that my feelings about this subject may evolve over time, but for now this is where I am. 

I just tell them that I have not thought about it.  I really have not allowed myself to go there.  If I do start to go there, my thoughts immediately go to my beautiful daughter.  She still needs me.

Although, death is not necessarily a negative thing.  I just choose to spend my mental capacity on this life.  I try to focus on the blessings and miracles around me.  Actually, praising God for these things kinda lifts me up by my boot straps. 

I have told you before that God has a plan.  I would rather it be here on this earth as a happy & healthy participant in society.  But...!  Lets not think about it.  

Oooooops!

So I kind of mis-spoke.  The trial I am currently in is more of a study than a trial.  To me that means that it may do more for cancer research than it does for my cancer.  I am excited that I have gotten some benefit out of it.  CT scans in a few weeks will tell us if the lymph nodes have decreased in size.  I sure hope so.  I need some good news, today. 

I have volunteered to be in two other studys at MD Anderson over the past year.  I have volunteered to be in another study coming up.  Usually, I have to fill out a lot of forms and give them my blood.  I don't ever here from the scientists again.  I am all about helping these amazing people help find a cure.  

I will be honest.  I am so impressed with these researchers.  They have their PhD or MD and their brilliant minds go to work on things that some of us just don't understand.  These amazing people at UF could clone me.  BRILLIANCE!  But God kinda already has done that (I have a twin sister).

When I talk to them, I really have to pay attention.  They are using words that I have never heard in my life.  Yesterday, UF researcher tried to explain to me how my cancer evolves.  So the cancer that is in me now is probably the same cancer that we treated the first time, but it likely has evolved into a stronger form and more resistant to different treatments. 

I guess I have SMART cancer.  Teeheehee!

p.s.  If the researchers read this they are going to laugh.  This is not how they would have described this.  But I have to put it into my own little examples just to understand what is going on.

Radical Remissions!!

Radical Remissions is the name of the book that I am reading.  A doctor decided to document and collect data from people that have found healing for their cancers by utilizing alternative medicine, either alone or in combination with traditional medicine.  These are people that were given no hope and sent home to die.  He has compiled a list of 9 things that all of these radical remission patients have in common.

 So what were the 9 key factors that these patients with radical remissions employed?

1. Radically changing your diet.
2. Taking control of your health.
3. Following your intuition.
4. Using herbs and supplements.
5. Releasing suppressed emotions.
6. Increasing positive emotions.
7. Embracing social support.
8. Deepening your spiritual connection.
9. Having strong reasons for living.

Dr. Turner goes into much more detail about these in the book. In fact, each factor has its own chapter, as well as stories of how patients used these factors to participate in their healing journey.

I have some work to do...

How Are You Feeling today, Cheryl?

Although, I am at work...I am in a decent amount of pain.  I had some pain the first round of cancer.  This time it is different.  Because I have peritoneal cancer my diaphragm is in constant pain.  Deep breaths hurt the most.  Part of this kind of cancer is the sharp stabbing pains.  These pains show up anywhere at any time.

I am close to needing pain meds, but I am putting that off as long as I can.

The ascites is back.  This is the cancer fluid that fills the sack around all of my organs, fills my lungs and my abdomen.  This is probably the least comfortable part of it all.  My stomach is starting to look like I am pregnant again.

I have not found any lumps protruding outwardly from the cancer in the lymph nodes.

Yep!  You guessed it!  The current trial I am in has stopped working.

I remain extremely positive and continue to have fun.

So...What did they say?

I had a visit to an immunologist/gynecology oncologist this week.  He is in the same group as my oncologist at MD Anderson.

Immunology is fairly advanced for melanoma cancers.  Actually, MD Anderson was on the national news last week for their giant leap forward with immunology fighting melanoma cancer.  The doctor stated that they are not anywhere near that for female cancers.

There are some possible options for trials.  First they have order molecular/DNA/genetic type tests on my tumors that they removed in January.  They are looking for a mutation in my cells that allows cancer to grow in me.

Additionally, I am having HLA DNA tests run here and having the results send to MD Anderson.  I hope that I have enough blood for all of these tests.

So I go back in a few weeks to find out where I stand and how fast I can start a trial.

Changes In Behavior!

The first time I told everyone I had cancer they wept, they hugged me, they prayed for me...I expected it.  I knew that most would take it harder than I did. 

 With the announcement of the return of the cancer, behavior toward me has changed.  It is not a bad change.  Actually, it is just that it is worth mentioning if I am going to have a comprehensive blog about my journey with cancer.

The difference is that many people want to spend time with me.  Maybe, they need just one more dose of my insanity before I die.  Possibly, they want to glean one more small piece of wisdom from me.  Perhaps, it is a chance to finally tell me exactly what they think of me. Could it be that they want to gaze upon my beauty one more time.  Lol!  At least I don't suffer from low self-esteem.

Either way, it is a lot of fun!  Everyone blesses me in a wonderful and different way!
 

But You Look So Good!

...said my neighbor yesterday when I popped over to give her some grapefruit off of my tree.  "How can you have cancer?"  She simply could not get over the fact that I still work in the yard and do all the same things I did before I got cancer.  I told her that I was a healthy person with cancer.

The miracle here is my quality of life.  I am enjoying every day that I feel good, because I am pretty sure that I have a few yucky days ahead.  I purposely try to set myself up for a good day.  It really is just a decision for me...for now.

Managing My Own Care!

The other day a friend was grilling me on what treatment I am on and what the next steps are.  He had one final very important question for me..."But aren't you concerned that you are managing your own care?"  Heck, no!  I am thrilled.  "But don't you want a doctor to manage your care?"  Heck, no!

I am going to hop up on my soap box for a second or two:
And here is the problem with some of our society.  Don't sit back and let things happen to you.  Get out there and educate yourself.  Why do we want the government telling us what to do with every area of our life.  That is just lazy.  The Government is too big and already makes to many mistakes. 

I am not going to let my case fall through the cracks of a doctor's office.  I am going to do my own research and ask my own questions.  I have other friends helping me research.  This way I have a list of options.  I feel more in control and empowered.  I don't want to feel helpless with no hope.

Haven't you heard stories of people that the doctors have sent home to die...and then for whatever reason they go try some off the wall treatment that works.  I don't want to be backed into that corner.  I want to try every thing until I find the treatment that works for me.  I have to be an informed and active consumer especially when it comes to my life. Now, is not the time to get lazy.  Now, is the time to get up and fight.  Every time this cancer comes back, I am going to fight it down again. 

The longer I fight and survive the closer we are to a cure!

So, What Are My Chances?

From a spiritual point of view, only God knows that!  But from a human point of view...NOT GOOD!

With this recurrence my life expectancy just went down the tubes.  Ovarian cancer is a booger.  Although I do not have my ovaries, any recurrence would be considered ovarian cancer.  Yes! Even if it recurs in my brain or bones, it is still considered ovarian cancer.  Weird!

Don't worry, I am like my father.  I have a lot of irons in the fire and I have a lot of options. 

Nothing New!

I continue to move forward with the University of Florida trial.  In this trial I take some kind of oil about 3 to 4 times a day and then I also take 4 pills 3 to 4 times a day.  It is a lot, but I am not complaining.  It beats the heck out of chemo.

I am still trying to get an appointment with the Immunologists at MD Anderson.  I have sent my records to National Institute of Health.  And now all we do is wait and pray. 

A few weeks ago the ascites (fluid) in my abdomen was starting to build up and my abdomen became very sensitive to the touch.  Then my chest started hurting and it was difficult to breathe.  A sneeze would make me yell.  The good news is that it seems to feel much better this week.  Of course, rest makes it feel better.  The swollen lymph node in my groin is going down and it is not hurting anymore. 

This may be an indication that the trial is working.