Tuesday, June 26, 2012

To God Be The Glory

With all things there are times where you just can't explain what has happened.  Sometimes they are big things like being healed from a disease.  Other times they are small things like seeing a rainbow on a day you need to be reminded of God's promises.  For me this blog is a great example ofthe unexplainable.

In less than a month God surely has blessed this blog.  It has already reached people in 11 different countries.  He has led people to this site more than 1000 times.  There are people following the blog.  I have had nothing to do with this.  It has all been in God's plan.

I want to thank all of you who have read my blog, shared my blog, and even prayed about my blog with me.  Thank you for putting up with my limited knowledge of blogging.  I am trying to learn more to make this better.  Where this goes I have no idea.  My only prayer is that it continues to share God's love with others.

I hope you can see something today or in the near future than can't be explained.  When that happens, know that you have a loving God who is taking care of every part of your life as only He can do.

Thursday, June 21, 2012

Sometimes with Cancer Things Do Go Well

When you are fighting cancer, it's easy to get caught up in the hard things.  You can see the good things, like numbers going down, tumors shrinking, or even feeling better.  But just like any difficult memory it's hard to totally block it our of your mind, and at times it can consume you.  That's what my day was like on Tuesday. 

Wednesday morning I felt better physically.  As I was waiting to be picked up for hydration I went on Pinterest and saw this picture:
That struck me profoundly.  In my cancer journey we've been waiting for things for a while now.  I took a step back, prayed, and knew for sure that I did trust God when His answer was wait.  I just didn't know that His answer was going to change that day.

Yesterday as I was in hydration, one of my oncologist's nurses came up to see me.  This is not a normal thing so it was a surprise.  She said,"I have some good news for you.  Well, at least I think it's good news."  My friend and I were a bit taken aback with her statement, but that's the type of humor I've gotten to know from her over the past three years.  She then told me that I had been approved for the parp inhibitor.  I was in shock, mostly because it wasn't supposed to happen this quickly.

When you go through this process there is quite a bit of paperwork to fill out.  I didn't have to do any of it, but by the reaction of my nurses, I knew it was going to be a big job.  They also had to get my whole history together and my oncologist had to write up my story as to why this would be beneficial for me.  I had confidence that my team would get this done quickly, but you never know how long a drug company can take to review something like this.

Everyone, my oncologist, my nurses, and of course my family was in shock with the speed that this happened.  I'm also in shock as to how I am going to get this new medicine.  I don't know what was said, who saw this or what made them agree to this.  But I do know that God worked this out just for me.  And this is all I can say in response:

I'm sure some of you are wondering what a parp inhibitor is.  The best layman's term explanation that someone sent me was from the website Cancer Research UK.

"To use an analogy, cells with a faulty BRCA gene are like a table that’s had one of its legs knocked out from under it. It can still just about function, although it’s a bit wobbly. Knocking out the other leg (using PARP inhibitors) makes the table completely unstable and it falls over.

PARP inhibitors work by preventing cancer cells from repairing certain types of damage to their DNA. Most healthy cells have other ways of repairing DNA damage so they aren’t affected by the drugs, but cancer cells with faulty BRCA1 or BRCA2 can’t carry out these repairs. The combined effect of knocking out both DNA repair mechanisms is so severe that the cancer cells die."  (If you want a little more information from this site here's the link) 

If everything goes smoothly, I will be starting my clinical trail on July 6th.  I will be on the parp inhibitor Veliparib or ABT-888.  A parp inhibitor is different from chemo in that you take it orally rather than through infusion. One plus will be I won't have to make as many trips to the cancer center. I will be taking 3 pills twice a day, for a total of 6 pills a day.  This will be something I will continue on, as far as I know at this point, indefinitely.   The main side effect is nausea, which could be a challenge for me because it's hard to find something that will calm my nausea.  But that should improve after about two weeks.  I have heard from others on this parp inhibitor that they have done fine with the nausea and some haven't had any.  We will just let God lead the way on that one.

We meet with my oncologist on July 2nd and we will have our many questions answered. 

Is this the silver bullet or the golden ticket that we have been hoping for?  Truly, only God knows that.  The main reason my oncologist wanted me on this is because she knew it would give me the best quality of life I could have while still fighting cancer.  But like I've always said, cancer isn't bigger than God.  Now, as always, we pray for another yes to come my way. If it doesn't I will just look back at today and remember "Do you trust me when my answer is wait? ~God"

Tuesday, June 19, 2012

It's Ok to Cry

Some days on a cancer journey, you just need to cry.  You realize once again you can't be strong all the time and you just need to let it out. Today is one of those days.

Sometimes I just hate chemo so much.  It makes me tired and sick, I don't always want to be around my family and even though my head knows it will just be a few more days of hardship, my heart can't see the light at the end of the tunnel.  I force myself to eat and drink so I don't get dehydrated, but that's hard because sometimes that makes me feel sick.  I just want to crawl in a hole, sleep, and wake up when this is all over.  Of course that's not the way it's going to be so I have to find another way.

My way is to cry.  It's a release and a cleansing for my mind and my emotions.  For me it always seems to happen in the shower.  There's just something about water that lets my emotions out.  Maybe it's because there's something about water that has always calmed me.  I remember riding my bike to a more secluded spot along Lake Michigan when I was growing up in Illinois.  I could sit and watch the water for hours if I was able to.  The ocean does that same thing for me now.  Now if only the water could take the cancer away.  But it doesn't, so I have to use that water to help calm myself in another way.

So i cry, not only physically but also in prayer.  I ask God to once again give me the courage and the strength to get through yet another round of post-chemo days.  And I am reminded of verses in the Bible where He tells us to call on him and that He hears us.  Two of my favorite are from Psalm 56:8 and Psalm 116:1-2.

Both of these verses remind me that God will hear me when I am feeling like this.  I don't have to be strong for Him or for anyone else.  He is going to carry me through these down days.  Then I will be able to look back and see all the wonderful ways He once again helped me through this trial.

So today I am going to cry.  Will I feel a little guilty about it?  Probably, but that's just because I hate feeling like I can't be there for my family.  But when it is done, I know I will be refreshed by the wonderful love God has for me.  He hears my voice, He turns His ear to me, He keeps track of my sorrows.  And with all that He alone knows the best way to help me.

Thursday, June 14, 2012

What If My Cancer Becomes Chronic Cancer?

Just over three years ago I was diagnosed with stage three ovarian cancer.  It was unexpected, scary and devastating.  But once the surgery was done we were given hope that I would go into long-term remission.  I was young, healthy, and even though it wasn't caught early, my team felt I was one who could beat it.

Just over two years ago, four months after finding No Evidence of Disease (NED), the cancer was back.  While this was hard to hear, we felt that it was found early and once again I could have NED.  That wasn't the case.  Because of my BRCA mutation, and the fact that it was found so quickly, my oncologist termed my cancer as platinum resistant, recurrent, and incurable.  We were now looking at quality of life issues rather than quantity of life issues. 

Just recently I heard a term that is much more tolerable than incurable. Chronic cancer was the term I heard.   Incurable, at least for me at first,  gave me the thought that I was going to die very soon.  But that wasn't the case.   Chronic means that it is ongoing and can be treated, even if it isn't cured. Chronic means that there are options out there that can help you keep your cancer at bay. Chronic means that you can live a full life, even if it isn't as easy as before you had cancer.  There are many chronic diseases out there like diabetes, arthritis and fibromyalgia.  Cancer can be one of them.

So what do you do if you find out your cancer is chronic?  For each person it is different.  Some people, like me, will rely on their oncologist and team to give them the best course of action.  Others will do lots of research finding different methods of treatment or lifestyles (diets, naturopaths) to change their treatment or help their treatment.  Others might just choose to stop treatment depending on their age, how long they've been battling, or just knowing they can't handle any more treatment.  That is what my mom decided to do when she was battling ovarian cancer.  There is no one right answer for everyone.  It has to be what is right for you.

There are some things, however, that I think everyone can do when faced with chronic cancer.
  1. Give yourself the right to be sad at times.  We so often hear that we need to stay positive and strong to beat this, we feel like breaking down isn't either of those things.  It's OK to be sad.  It's OK to be scared.  However, if you feel sad all the time, you might have  a chemical imbalance or a vitamin deficiency.  I have been on a calming medication that works for me.  Talk to a doctor or psychiatrist for help.
  2. Find an eating plan that is right for you.  Dealing with cancer long-term means your body is going to go through lots of changes.  One that happened to me recently was that all of the sudden I became lactose intolerant.  I have many digestive issues so I'm trying to keep up with my fiber intake and need to take a daily dose of Miralax.  I also need to keep up on my protein intake because of the chemo I am now on, because that just makes me feel better.  It's a juggling act, and at times I feel like I'm always learning something new, but it's something that you can do.  Once again, make sure you talk about any diet changes with your oncologist.
  3. Get exercise when you can.  When I first started battling cancer, I was able to do lots of walking.  The more chemos I've been on, the harder it has become.  Another reason is that I got very sick the beginning of this year due to fluid build-up and I couldn't spend much time out of bed.  Even taking a shower put me down for a couple of hours.  I've learned to walk either around the house or outside, depending on what is right for me that day.  None of these walks are long. And, even though I get discouraged at times, I look back and remember where I was just a few short months ago.  And sometimes exercise just means activity.  I can do much more around the house than I was able to.  That not only build up my body, but also my mental state.
  4. Rest when you need to.  I think that is one of the hardest things for me because I was always such an active person.  But once again, just like the previous point, I was very sick and I have to remember that my body needs rest.  So I try and rest when my body tells me to.  If I rest each time my body tells me to, then I'm not so tired the next day.  If I don't, there is a good possibility that I will be super tired and not able to do much the next day.
  5. Look for the blessings in your life.  Dealing with cancer is hard and at times we get so consumed with cancer we forget to look around us and see all that we have versus what we have lost through cancer.  My palliative care nurse told me to find something tangible that gives me joy every day.  She has flowers that she can smell and see every day and that gives her joy. My joy in general comes from my children.  Once again, it will be different for everyone. 
  6. This last one might seem strange, but it's one I've learned over three years of chronic cancer.  Look for blessings that have come from your cancer.  My children and I are much closer as we have gone through the ups and downs of cancer.  My husband and I communicate better.  I never knew how many people truly cared about me until cancer came into our lives.  Would I want to have cancer if I had the choice?  Absolutely not.  But at the same time I wouldn't want to never see the blessings that have come through my cancer.
The things above can help you as you deal with chronic cancer.  But that is not what is going to get you through every up and down that you have.  The only person that will do that is our God.  I've learned and relearned how to rely on Him.  He is the source of my perseverance.  Here is a Bible verse that talks about perseverance.

It can seem strange to see in writing that we can rejoice in our sufferings. Note that it says in our sufferings, not because of our sufferings. Just look at all the things suffering produces -- perseverance, or bearing up under adversity; character, or positive attributes through withstanding tough situations, and hope, or trust and confidence.  God works all these things in us through the hardships that enter our lives, whether it be money struggles, family struggles, health struggles, and even chronic cancer.

And what about that hope, or that trust and confidence.  In all our struggles, we have that hope and confidence that God will take care of us.  Why?  Because He has already taken care of our biggest struggle, our sin.  He did that when He sent His Son to live a perfect life, die on the cross and rise again.  Our sins are forgiven, no matter how great or small we think they are. We now have the hope of going to Heaven.  If our biggest struggle has been taken care of, how can we not say the God can take care of these other ones?

You can deal with chronic cancer, not because of your own power or knowledge, but because of the power and love of our God.  Let Him lead you in all the decisions you have to make.  Let Him build your perseverance, character and hope.  That's how I have been able to deal with this diagnosis, and that's how you will too.

Friday, June 8, 2012

Finding Peace With Birthdays

Ah,  birthdays.  I remember so clearly being a child and anxiously waiting for my birthday to come.  I was able to watch tv in the morning (when I was growing up game shows were all the rage in the morning), there was always a fabulous cake awaiting me, and, at least in my memory, that was the one day I could count on my five brothers to be nice to me.

As we mature, (notice I didn't say get older), our perception of birthdays change.  They are still an exciting day for the most part, but they don't hold that ultimate importance that they did as a child.  Sometimes we even try to avoid them. 

So what happens to birthdays when you have cancer?  Can you be excited on that day, or does it end up being a day of dread?  Do you embrace them or do you avoid them?  Do you even have a choice?

Because I am dealing with cancer long-term, I know my perspective is different than someone who is blessed to go into remission.  But through the past three years I've seen that even though my perception of each birthday has changed, my God hasn't changed.  He has been there for me always.

My first birthday with cancer was a short two weeks after I was diagnosed and my first chemo was a few short days away.  You would think that I would have be seriously depressed with the thought of cancer and chemo.  But I wasn't.  Here's what I wrote on my Care Pages site.
     I've had this song running through my head today, except I changed the words. Instead of "It's my party and I'll cry if I want to" I've been signing "It's my birthday and I'll laugh if I want to. You would laugh too if it happened to you."... It would be so easy to say "Why me?" Believe me, there have been many situations in my life where I have done exactly that. Once when [my husband] and I were dealing with our young twins, we were saying exactly that. A good friend who also had twins gave us this advice: Don't look at the why me's, but look for the that's why. That changed our entire outlook and is something that has always stayed with us.I don't know what the "that's why" answers are right now. I could guess that it's to spread the Gospel, which is always God's plan. I'm sure there are more reasons. I don't know if I will ever know all of them. But what I do know is that God has given me peace from the time I was out of recovery from my surgery. There are times that I am scared of the unknown, but they are quickly swallowed up by that incredible feeling of peace.
My second birthday was similar.  Even though my second birthday was two months after I found out the cancer was back and a month after my doctor told me in medical terms my cancer was incurable,  we  received wonderful gifts of a California trip, a family photo session and gift cards to fund all our trips.   My third birthday was much different.  It was surrounded with being on continuous and several different chemos over 9 months, as well as a disappointment of not being able to attend a family reunion.  I wasn't depressed but I was sad.  I really started wondering if I was going to be around to watch my children grow up, much less being able to see grandchildren.  I was thankful for the birthdays God had blessed me with, but I couldn't stop wondering if it was my last.

I'm now approaching another birthday, but the feelings are totally different.  They are feelings of contentment because of these verses of Psalm 139:

 I am content because God has my days planned out.  He had them planned out when I was "knit together in my mother's womb."  When I remember that He has had my plan worked out long before I was even thought of, it gives me peace knowing that He will take me home to Heaven when my work here is done, and not before.  He will lead my family and I each step of the way as we decide what courses of treatment to use and not to use.  And when it's time for me to be done with treatment, He will be there holding me up.  And knowing that, how can you not have peace?

My prayer is that I will have many more birthdays here to watch my children grow up and help my husband raise them.  But even if that is not His plan for me and for my family, I am at peace knowing that He not only has my plan taken care of, he also has the perfect plan for my family.  He has your plan ready, too.  Lean on Him and let Him guide you.

Wednesday, June 6, 2012

Learning to Be an Inspiration

Inspiration.  One dictionary definition states that inspiration is

 I'm sure we've all seen things or known people who inspire us for different reasons.  I never thought that becoming a cancer patient would make me an inspiration. 

Throughout the past three years some people have said that I'm inspirational. I still don't quite know how to react to that. I can't say it's anything that I've ever striven to be. It's very humbling to have someone say that to me. In all honesty though, when you are a cancer patient it's hard to see yourself as an inspriation because this isn't something you chose to do, but instead it's something that has been thrust upon you.  I heard one cancer patient say that after so many times of being called someone's hero she felt like saying, "I can't be.  It's not like I ran into a burning building to save someone's life!" 

But as cancer patients surviving each day, sometimes with dignity and grace, and other times with not so much, people look at us and are surprised how we survive it all.  That's what is inspiring to them and makes us heroes of sorts.  We look at it as just survival while they look at it as something amazing and something they could never do.  I'm sure that even as cancer patients we can look at other's struggles and wonder if we could get through that.  That's why I  think anyone can be inspirational. Let me tell you about a few who have been inspirational to me.

I have a friend who is the first to volunteer meals and help whenever someone is sick or in need. I have another friend who lost part of her family in a car accident and then was able to direct a wonderful Christmas concert a month later. I have friends who after their father died were able to sing in full voice and as loudly as they could their father's favorite hymns at his visitation. I have another friend who can look money problems in the eye and with full confidence know that God will take care of them. I have another friend who you know when she promises to pray for you will do so for days on end, even when she has many trials of her own. I never knew if I could do what they did. But they weren't inspirational for what they did. These people were inspirational to me because I could see God through them. They knew God was right there and they could get through the bad stuff. And I've learned that's what is hard for one, can be easy for another. It's all in God's plan.

So for us, cancer might be the "easy" trial. It's not because of anything we have done. And it's not because there aren't hard parts. There are many parts of this trial that have been dowright discouraging over the past three years.   It's because God through His grace and mercy is letting us feel Him every day in some way. We have done nothing to deserve this. Our prayer is that when the next trial comes our way, that we can remember how God helped us through this one and that we can keep clinging to Him knowing that He is guiding our path for His good.

Yes, it is hard to hear the words that I am an inspiration to others at times.  I don't feel worthy to be called an inspiration.  But if I can in any way shine God's light through this cancer, then, with God's help, that it what I will strive to do.  And with God's help you can do it too.

Friday, June 1, 2012

Can Our Children Handle Cancer?

It's my children's last day of school today.  I can't tell you how excited I am to have them around more again.  We are at a point where, in general, they get along and are helpful.  I told someone recently I will probably go nuts this summer with their silliness rather than their fighting.

But what to do we with our children when something bad comes up in our family life?  I think it's our natural instinct, especially as moms, to try and protect them.  I don't think it matters how young or old are children are.  We are like that mother hen we hear about who has snuggled all her chicks under her while a fire is blazing around them.  The mother hen dies, but the chicks survive.  It's a beautiful story, but I don't believe that's always the best to not show the trials they could be facing.

When I was diagnosed with cancer my children came to mind almost instantly.  How were they going to handle this news?  My daughter had already seem my mom die of the same cancer I now had.  How is she going to handle the possibility of her mom dying?  What about my boys?  They were only 7 at the time and are slightly autistic.  Could they even comprehend what was going on inside of me?

It wasn't until at least two years later that I realized how well they were coping with our family life being different.  I had one of those moments where I thought, "Of course they can handle this.  God has and will make sure of it!"

As adults we can look back at our lives and see the times that were hard and see how things have fallen into place in the past or the present that got us through those hard times.  That's not coincidence, it's God.  Our God has put everything into place to help us.  There are two verses that constantly remind me of this.

The first is Philippians 4:13.

This verse reminds me that I am not strong because of anything I have or can do. It reminds me that whatever trials I go through, God will be right there giving me the strength I need. He has shown that to me over and over not only in what I have had to overcome, but also by what my children have been able to handle.

The second is Jeremiah 29:11.

This has been a go to verse for our family ever since my diagnosis.  Why?  Because we are reminded that even in the worst times God has our backs!  He has a plan for all of us.  His ultimate plan, to get us to Heaven, was already taken care of when He sent His son to die for our sins.  Since that is already taken care of, how can I not be sure that His plan for me will also be wonderful.  It might not result in healing, but it will result in my going home to Heaven.

With these two verses we have been able to do things with our children to help them deal with our life with cancer.  From the beginning, we were able to be very honest and open with them about what was going on, at an age-appropriate level.  I was reminded at a recent parent workshop from a teen who saw her mom die from cancer that "Kids aren't stupid!"  They will figure out that something is wrong if you don't tell them.  One game we played when I was first diagnosed was guessing how much my cancer number had gone down.  Because at the beginning of this journey we were counting on a cure, it was a tangible way for them to all see that the chemo was working.

Another thing God blessed us with to help our children was our introduction to Gilda's Club in Seattle.  We have a wonderful children's counselor there who runs many programs for children and parents.  Our first glimpse of that was Camp Sparkle where they talked about cancer in the morning and went on a field trip in the afternoon.  It has made a world of difference in their lives ever since.  There are Gilda's Clubs around the country that might be able to help you too.

God doesn't give you more than you can handle.  While that isn't a Biblical quote, I believe it's true, not because of our strength but because of God's.  And if it's true for adults, it's also true for children.  Jesus brought children into his arms when He was here; He will be faithful to bring them into His arms today.