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Last time, this round!

Today is treatment day.  It’s an odd feeling that’s hard to describe.  On one hand I’m excited that I’m receiving treatment and doing something proactive to get better.  On the other hand, it’s kind of hard to get excited about receiving Chemo.  The good news here, of course, is that we don’t have to go to San Antonio any more!

Today I want to talk about something that we haven’t really brought up.  The survivability of this cancer.

Practically everyone we’ve talked to has had a different opinion on the survivability of this cancer.  When the doctors lump me in with the patients that have Pancreatic Cancer, it’s pretty grim.  Odds are close to 90% that a patient with Pancreatic Cancer will, even after surgery and treatment, have a cancer come back within 5 years.  When it does it is particularly aggressive.

Here’s the key; I don’t have Pancreatic Cancer.  My cancer is Ampullary.  The Ampulla of Vater is the duct that runs from the pancreas to the small intestine.  In a study I ready by the School of Medicine at UCLA (I may have that wrong, it might have been USC, I don’t remember) only 0.02% of the cancers diagnosed each year are Ampullary.  So what does that mean.  Frankly, it means nobody knows!

Because so few patients are diagnosed with this type of cancer, there is no research done on it.  Not only is it too hard to research because it’s so hard to find test subjects, but even if you do, there’s not enough money to be made in finding adequate treatment.  Cancers like, Breast, Colon, Prostate which are much more common are the ones that get the research dollars.  Don’t get me wrong, I completely understand.  I would direct the monies in the same way.  But the bottom line is that they just have no idea what the real prognosis is going to be so they just lump it in with Pancreatic Cancer.

When I was disqualified for the research study, the doctor running the study told me that patients with Pancreatic Cancer have close to a 90% chance of reoccurrence.  His hope was that with the vaccine he was developing that he might be able to reduce that to only 30%.  I was disqualified because, according to him, my cancer only had a 30% chance of recurrence anyway.  I could completely skew the results of the study.  The bottom line is that they have no idea what’s going to happen.  Nobody has ever taken the time, money or energy to find out.

The other day I was talking to Lisa about this.  I told her that truthfully, I may have 6 months left, or I could have 50 years left.  I believe that’s true for everyone.  There is very little doubt in my mind that I will still be here for close to another 50 years.  Lisa says that’s because I’m the most stubborn person she’s ever met.  Maybe that it.  Maybe it’s just that I have faith that God’s not done with me yet.

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Some good news!

I know that last week Lisa posted about our delay in treatment.  I got an update on that as well as some very welcome news along with it!

The reason that we had the delay in the first part was because of the clinical trial that I agreed to participate in.  In this trial they are developing a vaccine for Pancreatic Cancer.  I won’t go into the specifics now, but the whole thing is fascinating. Apparently though this vaccine needs to be administered one week before Chemo starts.  So that pushed us back a little.  In addition to that this is phase 3 (of 3) of the study.  This is the one that is presented to the FDA for approval before commercialization of the drug. Because the FDA strictly scrutinizes this particular aspect of the study, they are very particular about whom the allow as a subject.

Yesterday I received a call from my Oncologist (He’s also the one leading this study).  He old me that they had done a thorough review of my medical records and have determined that I’m not a candidate for this study.  You see, they are developing a vaccine for pancreatic cancer.  I don’t have pancreatic cancer.  I have Ampullary Cancer.  Although they are similar, they are different.

The Ampulla is somewhat similar to your body’s bile duct.  Bile ducts come from the Gall Bladder and the Liver, the Ampulla comes from the Pancreas.  Because this particular type of cancer is so rare, it doesn’t get its own classification.  It simply just gets lumped in with the pancreatic type.  Biologically though the two type of tumors are very different.  The Ampullary tumor is far less aggressive than the Pancreatic tumor.

According to Devalingam Mahalingam, M.D., Ph.D, my new oncologist, the rate of recurrence for Amullary Cancer, without Chemo and Radiation is only about 30%.  In fact, there are no clinical studies on Ampullary Cancer to even suggest that Chemo and Radiation reduce the chance of reoccurrence.  In my mind, that all very good news.  I have to be honest, the odds the doctors were giving us prior to yesterday were not anywhere as good as this.

Dr. Mahalingam did say that the treatment for both Pancreatic and Apullary tumors are identical.  He went on to say that in his clinical opinion I should go ahead and submit to Chemo and Radiation.  I am in total agreement.  So I will begin on Monday afternoon.

From my perspective this is simply affirming what I’ve believed all along.  Once this treatment is over, I get to return to my regular life again!  There is definitely a light at the end of the tunnel.

I have said many times, “God isn’t done with me yet.  I’ve got way too much to do!”

Why Are These Things HAPPENING????

It is the question so many of us ask when things don’t go our way…..we lose a job or your car window gets busted out or your husband gets diagnosed with cancer…….it’s so EASY to ask why these things are happening….like we are entitled to an easy, stress and drama free life…..

Sorry kids…..it just doesn’t work that way……

I have heard this message over and over the last several years courtesy of my wonderful Pastor and it’s taken 40 (something) years to finally figure it out…..God isn’t “doing this” to you…..He just doesn’t work that way… ….it’s so easy to slip into the “woe is me” and “why is God doing this to me”  mode when things go sideways……

I know I used to do it…..I spent a lot of time in my early 20’s pretty pissed off at Him…….but I grew up and learned to see things in a different way…..that we ALL have trials and tribulations and it’s not going to stop…..it’s US that needs to change….change how we look at it all……

A friend of mine posted this article and that is really what prompted this post. It’s titled “What to do, what to think when crisis arrives”  I especially liked the quote at the end…

Perhaps the best way to meet the crises of our lives is to admit them and their accompanying feelings, spend time in genuine reflection, and be painfully honest with ourselves.

I know when we are hit with some big news I go into about a 24-48 hour funk……I may cry all day or lay in my tub for 5 hours but that is just the processing taking place……and that is my time of reflection…..I allow myself to feel it all and I take that time to express all my fears and sadness and I can give it all away……and He takes it every time……and then I can let it go…… and that’s the hardest part…..letting it GO……sure, it comes back and rears its ugly head again so you give it away….AGAIN….and again and again and again…..whatever it takes……

It’s taken a lot of years and a lot of tears to make it here……it’s what works for me…….but spending my life moping around and complaining how hard my life is isn’t the answer…….for me or anyone really……what makes me so special that I should be exempt from the tragedies of life? Saint or Sinner….. none of us makes it out of here without trials and tribulations……and it’s learning how to deal with it that makes your life wonderful or unbearable…….

make it wonderful…….

Prayers for the Faithless

It’s 5 am……like clockwork the dogs need a trip outside……so following Abigail’s exuberant leap back into bed I crawled in next to her to snuggle in for the next 2 blissful hours…..then my mind starts going……then the music from our church service starts……I can sence His presence with us…….and it’s time to give up the plan for additional sleep (I can catch up on that later!) and hit the blog…..just too much going on inside this head!

Yesterday was such a great day…..the weather was beautiful, the windows and doors were open and it was like a breath of Spring blew through the house……

….then the dust bunnies decided to come out and play……

so the day was spent cleaning, doing laundry and making dog food! But it was long overdue. I am a cleaner you see…..Paul is a pacer….walking throught the house like a caged animal…..me, I CLEAN! The shower really took the brunt of it yesterday. But it shines like a new penny and I am confident I only lost a few percent of lung capacity due to the chemical combination I made in an attempt to chip off  particularly resistance soap scum. And I can rest easy knowing that IF someone has to come stay with my kids, the house is CLEAN! I know, I know….these are my friends and family….they don’t care if my house is dirty…..yea, yea, yea I know……but I think I really needed it.

Cleaning was almost therapeutic. It gave me time alone with my thoughts and with God. He hangs out when I clean you know. I spent a lot of time yesterday thinking of my friends without faith. Remembering my own trip into darkness….how sad and scary it was……but I was angry…..angry at what God had “done” to me…..so I turned away….but He stayed with me of course. And the last 20 years has been my journey back into the light.

I hear them cry….they are lonley….they feel unloved……but you don’t have to be! He is simply waiting for you to turn to Him to get ALL that you need! But you don’t believe He exists??!! That concept is so foreign to me now…..but I was there too……”God wouldn’t allow all these horrible things to happen”…”there is no scientific evidence” or “the Bible was written by a bunch of drunk monks”……I said them all…I believed it all….for YEARS……but I was WRONG.

I have been witness to the power of prayer NUMEROUS times! Just the fact I am sitting in my home is a miracle in itself. They money would run out and God would provide….a job would be offered the very next day or Paul would book a gig that night. It was CRAZY I tell you! When things were at their worst God would send that life raft like clock work! Recently, we were trying to figure out how to send Rachel to a weekend youth rally and within 15 minutes I had received a phone call saying a check for 1/2 the $$ was in the mail…….all we did was ask God to provide……not to send us money but to provide…..and He did, and HAS, numerous times!

Now, it doesn’t ALWAYS happen like that! LOL! There have still been lots of stressful and scary times and of course, we have lots more ahead. We will continue to have struggles. Being a Christian certainly doesn’t make us exempt from that! We will have tragedy and hard times just like everyone else and we will still get mad and upset…..but there is this underlying COMFORT….then we pull ourselves back from the edge, hand it over and say “God, this is yours” and he takes it and gets you through it.

Maybe that’s what it’s really about….that underlying comfort…..knowing you are not alone. Your friends may not come through for you….or your spouse dies….even your dog  just isn’t that “into you” today….but He will ALWAYS be there! All you have to do is ASK! He is there….all you have to do is acknowledge Him and accept His love! It IS that simple! But we continue to look for means of comfort outside our relationship with God…..we need a boyfriend or a man to be complete….to provide us with the comfort we seek……we need $$ and lots of it to be happy……everything will be fine if I can just “get this”…………*sigh*…..sometimes we just don’t “get it”! lol!…….there is NOTHING out “there” that will fill that void! That emptiness you feel cannot be filled with the love of another PERSON or with THINGS……there is only ONE thing that fits in that spot…and that’s God.

He doesn’t care what you have done! He doesn’t care if you have sinned! We ALL have! He doesn’t care about any of the horrible things you have done in your past! It’s a fresh start! He will welcome you with open arms and can provide you with a source of comfort and calm like you have never experienced! He will hold you….He will love you….He will provide for you…..all you have to do is ask! (see sample prayer below)

Am I living in some mass, planet wide hysteria?….this insane belief that there is a “God” that created us and is watching over us…..am I looking like a fool? ……Maybe……but I would much rather take my chances with Him……and this much I know…….my life is fuller…..I live with a sense of calm in my life…..I am able to look death in the face and not be afraid….too much……and He provides me with all I need…..and has for quite some time…ask me the stories! I have lots! ….. so if this is some delusion or mass hysteria…then so be it……but me and mine….we will follow the ways of the Lord!

If you aren’t sure what to say to God….try this! I found it online and it’s a great prayer!

“Lord Jesus, thank You for showing me how much I need You. Thank You for dying on the cross for me. Please forgive all my failures and the sins of my past. Make me clean and help me start fresh with you. I now receive You into my life as Lord and Savior. Help me to love and serve You with all my heart. Amen.”

Jesus said: ” Everyone whom my Father gives me will come to me. I will never turn away anyone who comes to me”. John 6:37

Mobilizing the Troops

So my mom is still 1300 miles away….Cincinnati….our hometown. She has been trying to sell her condo and move here for almost a year now…..and she worries about us…..

When i told her of all the wonderful people who have been praying for us and offering all kinds of help, it makes her feel better. She hates the fact that she is so far away from her only child and her beloved son in law…..especially now…..and of course I miss her……but the truth of the matter is….the troops are mobilizing…..

Paul’s name is appearing on prayer lists all over the country! And we have been surrounded….I mean SURROUNDED….by love and offers of assistance…..our Choir family, our church family, our Rockport church family, our friends and of course, our theatre family……all offering to help….and these people aren’t just saying that….they MEAN IT!

I know probably a dozen people I could call right now to drive us to Houston to MD Anderson….I have a dozen people I could call right now to go pick up my kids from school, feed them dinner and set them up in guest rooms…..I have a dozen people I could call right now and say “I just can’t get dinner together for my family” and I would have a casserole within the hour……and we are so very grateful!

God has provided help in the form of all these people…..they are doing the work of His hands and feet…..He has surrounded us with love and comfort and assistance….He has given us friends who want to help…who are at the ready….who are mobilizing the troops because they know the road well….how long and arduous it will be…..

He will provide….He WILL provide…..He DOES provide!

In His Grace,

Lisa

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