Multiple Days: The Number One "No-No"

Information can be hugely helpful in any disease process.  Information can also make you crazy.  I have a VERY hard time with doing research on my cancer on the internet.  The data and information available makes me anxious, fills me with fear and leaves me feeling defeated. There is so much information out there and you have to figure out what is good information and what is not good information.  I really recommend you let your cancer posse do this for you.  I know I cannot do it on my own without ending up in a very bad place in my mind and heart.

For me, the number one no-no is to get on the internet and start googling lymphoma.  It scares the hell out of me.  I can take only short bursts of information before panic takes over.  It's the sure-fire way to beat down my warrior attitude.

But every so often, I start to think I am strong enough to handle the information and I go searching.  And invariably, something comes up that scares the hell out of me and it makes me fall apart.  And as a former oncology nurse--the knowledge I have from oncology 15 years old does more harm than good.  The specialty has come so far from when I worked in oncology practice. But my memories and knowledge were far more of sick people that were fighting for their life than those we helped.  And I remember selfishly at that time wondering why any one would put themselves through this treatment. Prior   to my children, I remember telling my husband that I would rather die than go through any of the cancer treatement I saw during those years of practice.

I want to apologize to every one of my patients for that thought.  I have kids now.  I have more experience and friends and goals to accomplish.  I understand you will do ANYTHING to have more years with those you love.  It's a fierce desire.  I will fight unfailingly for time with my family.  It's not that I am afraid to die, or afraid of God.  It's just that I love my kids and husband that much.  We have so much more we want to do together.

You see, my disease is considered incurable.  Yes, I will get remission, but this is my life now.  And scientists quote numbers of 5 to 10 to 20 years.  But this isn't good enough for me.  My children will be 29 and 27 with 20 years...I want more.  More, more, more.  And I pray about this insanely.  I want to see my kids grow up and my grandkids and enjoy retirement with my husband.  I hold on to this want fiercely because it is based in love.  I cannot think that God will not understand this becasue I love my family so fiercely that I cannot and will not let them go yet.  God commanded us to love one another. It is this fierce love that calls me to fight. This cannot be wrong. 

But this love is also the center of my fear. I  am not ready to go. I am not ready to consider my mortality but when you are diagnosed with cancer and begin to ready the various websites--that fear creeps in because all you love is threatened. 

And all the research on the internet feeds this fear. When you feed a fear, it becomes larger than it really is. You build a monster in your mind that feeds the cancer and gives you one more thing to fight in this battle. 

When my fear gets so great, I cry. I'm not the strong warrior people see. I'm a mess. I curl on the couch. I may have kicked the couch on occasion and I rale at my situation. Fear is of the devil. It's not pretty. It's red noses, boogers, slobber, many tears, hot flashes and cold streaks. Fear takes your breath and freezes your mind. Your voice is raw from crying and screaming and your body aches from the grief. Fest is so much bigger than it really is. I MUST remind myself that MY GOD is bigger than MY FEAR. 

If the internet feeds your fear, get off of it. Give your fear to God. God is asking us to trust him through these times. I am being called to put my faith in something I cannot see or feel. And I am reading over and over in the Bible how God assures us that we will be delivered. God will be my strong rock and a castle to keep me safe and lift me up in his time and deliver me from my fear and comfort me when I am down and heal me if I put my trust in The Lord. 

I just need to stay off the internet in the interim. Don't feed the fears. 

Day 30: One month In

It's day 30 on this Journey with Cancer.  My life has turned into an ongoing roller coaster ride.  It's one high after a low after a high after a low kind of ride.  It's exhausting.  There are good days and there are bad days.  I have to remind people that even when I have a bad day, it doesn't mean that I am not fighting, or that I don't believe I can't beat this, it's just that some days you have a bad day and it sucks the life out of you.

We are in waiting mode.  I hate waiting.  As Dr. Suess would say, "And then you come to the dreaded waiting place."  Waiting for an answer.  Waiting for a treatment day.  Waiting for a treatment plan.  Waiting for information.  Waiting for a doctor.  Waiting for results.  Waiting for news. Waiting to heal.  Waiting for a moving date.  Waiting.  Waiting. Waiting.

Right now, we have to wait for our move.  My doctor here won't start me on treatment in the middle of the move, and my doctor in the new place won't make a decision until I get there on what that treatment will be.  We have gone from "you must get there by the beginning of December to start treatment--you can't wait!" to "We'll make a decision about your treatment when you get here.  Just let us know."  To say this is conflicting messaging is an understatement.

I have two very different doctors with two different opinions on what to do and neither of them gives me any sort of peace.  So, I am pulling on God for patience, because God knows I have none of my own. And I sit in this waiting place, where one doctor seems very comfortable with waiting and watching for me to become symptomatic and all I want to do is kick this parasite out of my body as fast as I can.  If I could claw it out of my chest I would. Watching and waiting doesn't resonate with me for a number of reasons. And I disagree with them completely when they say I am assymptomatic.

One doctor would start treatment in 2-4 weeks.  She would treat me if I was not moving--but moving gets me closer to family and help and good schools and a good job for my husband.  And since my cancer is so slow growing and indolent, the move doesn't seem impossible.  But then I wait some more.  And wait and hear things like "this cancer isn't curable."  "We'll get you in remission but you'll relapse."  And my mind gets spun up on "this is my life now," and, "this is not how it's supposed to be."

And then there is the other doctor.  The one I haven't met yet.  The one I am putting my faith, and trust, and life in her hands that I have not seen.  I am putting my faith in a woman from 2000 miles away and hoping that she will see me as a person and not a patient.  I am clinging to this belief that she will fight for me as hard as I am fighting to live a life with my family without cancer.  I have to hope and pray that I am not just another clinical trial to her. I have to hope and pray that she will have my best interest at heart and that she will become one with my cancer posse.  I have to pray that God has this all under control because I have NONE of it under control.

I'm in a roller coaster in my mind, my heart, my spirit, my soul and my body.  I am either high or low and I struggle to find the equilibrium.  And each day I walk.  I walk to get myself off of that high or out of that low.  And I walk to pray and I pray to continue to be able to walk. And I wonder, wonder wonder what my life will be like.  This waiting place makes you feel like you are in a stuck place.

And I still just want it to go away.  People, I have plans, and cancer wasn't in any of them.  And it

still isn't.  I want this crap out of my body now. And this makes waiting a tortuous place.

So the questions you are asking:  "What's the plan?" "What's next?" "What are you going to do?" I don't have answers. Because no one can seem to tell me what the plan will be. We will move and then we will hopefully find out what it next.  And so I wait, and I pray.  Maybe in this interim of waiting, God will make my cancer go away. Maybe God has bigger plans for me than I can understand.  I still pray for the cancer to go away.  I know God hears me.  I am learning to wait and see what those answers will be.