Wednesday, September 23, 2009

Wednesday, September 23, 2009: Developing Hinds' Feet

Brian and I met with our oncologist this morning and he agreed with our decision to put chemo on hold. I am waiting to hear from the insurance company if a PET scan would be covered and if it is, that will be our next step.

Dr. Downey shared the results of a recent clinical study with us this morning. This study followed 500 women who were in remission from ovarian cancer. Their CA125 results were monitored and when their "normal" had doubled (75), only half of the women and their doctors were told. Of the half that were told, most of them started back on treatment; the half that wasn't told the results of their CA125 did nothing. The end result showed that it didn't really seem to make a difference in the outcome whether they did the chemo or not. Basically the women who did the chemo had to deal with all the yuck that comes with it.

What they took from this study was that if there isn't any evidence of cancer (other than a rising CA125) quality of life is much better without the chemo. If other evidence is found (such as tumors) then it is another story. Right now I have no other evidence other than my CA125.

Dr. Downey also told us that he doesn't believe that I will ever be cured of my cancer - it will never go away. In fact his words were "I think you know by now that your cancer will never go away". At least those are the words I remember. Sadly enough those words didn't surprise me. Even though he doesn't think that this cancer is curable, he does think it is treatable. The question is what is the treatment going to be? And when do we start it?

I am reading the book Hinds Feet on High Places (for the 2nd or 3rd time) now and it is almost like I am reading about my life. The main character's name is Much-Afraid and the book is about her journey away from The Valley of Humiliation which is filled with her Family of Fearings - Craven Fear, Gloomy, Spiteful, Coward, Pride and Bitterness . . . just to name a few). On her way to the High Places she learns how to develop Hinds Feet so she can go to the High Places.

Right now in the book Much-Afraid has just come to a mountain. It is so steep and dangerous that she can't imagine climbing it. Her guides (Sorrow and Suffering) urge her to call to the Chief Shepherd and she is afraid to because she knows that he will tell her that this is the path she must take. She does call out to him and this is what I read this morning . . . .

"Much-Afraid," said the Shepherd again, "tell Me, what is the matter. Why were you so fearful?"

"It is the way You have chosen for me to go," she whispered. It looks so dreadful, Shepherd, so impossible. I turn giddy and faint whenever I look at it. The roes and hinds can go there, but they are not limping, crippled, or cowardly like me."

"But, Much-Afraid, what did I promise you int he Valley of Humiliation" asked the Shepherd with a smile.

"Oh, Shepherd, You said You would make my feet like hinds' feet and set me upon mine High Places."

"Well," he answered cheerily, "the only way to develop hinds' feet is to go by the paths which the hinds use - like this one."

Much-Afraid trembled and looked at Him shamefacedly. "I don't think - I want - hinds' feet, if it means I have to go on a path like that," she said slowly and painfully.

The Shepherd was a very surprising person. Instead of looking either disappointed or disapproving, He actually laughed again. "Oh, yes you do," He said cheerfully. "I know you better than you know yourself, Much-Afraid. You want it very much indeed, and I promised you these hinds' feet. Indeed, I have brought you on purpose to this back side of the desert, where the mountains are particularly steep and where there are no paths but the tracks of the deer and of the mountain goats for you to follow, that the promise may be fulfilled. What did I say to you the last time that we met?"

"You said, 'Now shalt thou see what I will do'," she answered, and then, looking at Him reproachfully, added, "But I never dreamed You would do anything like this! Lead me to an impassable precipice up which nothing can go but deer and goats, when I'm no more like a deer or goat than is a jellyfish. It's too - it's too -" she fumbled for words, and then burst out laughing. "Why, it's preposterously absurd! It's crazy! Whatever will You do next?"

The Shepherd laughed too. "I love doing preposterous things," He replied. "Why, I don't know anything more exhilarating and delightful than turning weakness into strength, and fear into faith, and that which has been marred into perfection. If there is one more than another which I should enjoy doing at this moment it is turning a jellyfish into a mountain goat. That is My special work".

I could type on and on because I love this book. As you can see, the style of writing is a bit unique and I'm sure it isn't for everyone. The first time I read it I was struggling with depression and it helped me so much. Right now I am struggling with cancer and the whys that come along with it.

A sentence from the book I read a couple days ago was this "This further delay is not unto death, but for the glory of God; that the Son of God may be glorified." One of my biggest struggles with cancer is the why? What purpose can this possibly serve? This sentence helps me understand. It's for God's glory - everything we do is for His glory.

On the blog I am very open and honest. In person though I tend to be quite guarded. I was planning on attending a bible study this year and last night I chickened out. I was going to meet the ladies in this group and just couldn't do it. I had been looking forward to it for weeks and then yesterday afternoon reality set in. I was going to let these women into my life, my mind and my heart. My walls went up and I went down into the pit. I just wanted to be home and left alone. A great friend of mine is in this group and she reached her hand down into the pit where I was. She gently told me that Satan doesn't want me in this bible study. She didn't try to grab me by the arm and pull me from that pit but said she was going to pray for me and left her hand quietly extended there for me when I am ready to take it.

I know God wants me in this bible study and Satan doesn't. I hate how easily I let those negative thoughts or stinkin' thinkin' take over my mind. Please pray that I would be willing to let my guard down and my heart to be reached and that I would recognize the negative thoughts for what they are - useless.

Brian and I are going on our annual fall camping weekend soon - just the two of us! Oh wait, just the two of us plus two dogs :) This is our favorite weekend of the year. It's not that we don't love our children but it is just so wonderful to get away from the world, away from reality and just be together. We watch movies, read books, eat and sleep. And this year we will also get many slobbery kisses from our four legged children. There is nothing like a pet for unconditional love!

We are not going to check my CA125 or have any scans done until after this weekend. I don't want anything going through my mind when we get away. Early in October I will begin having the tests done and then we will meet with my doctor again in November and go from there.

God put it on my heart to take a break from chemo and seek Him. I've taken a break from chemo but I'll be honest - I haven't sought Him. I've kept myself busy with cleaning and running kids here and there, a couple pity parties and anything else that would prevent me from spending that quiet time with Him. Honestly, I think I am afraid just like the character in the book. I'm afraid of what His plans for me are and what He believes I am capable of.

I do believe I have just typed our longest update ever! It feels so good knowing that I am able to share my true feelings - not so much in person but at least through our blog. Some day I will be as open in person as well and let my guard down. I wrote a poem a few years ago about this -

The walls I’ve built around me are up so very high.
I try to hide behind them so no one sees me cry.
Before the tears are on my cheeks they’re way down in my heart.
The loneliness is overwhelming and it’s tearing me apart.
I want to let my family in but it’s difficult to do.
How to go about it I just don’t have a clue.
I know I’m not alone or the first to feel this way.
Some day I’ll climb that wall -it just won’t be today.

As we take a break from treatment please pray that we will look to God every single day and grow in that relationship. That we will grow closer to eachother and be confident with the decisions that need to be made.

I can do everything through him who gives me strength. Philippians 4:13

Friday, September 18, 2009

Friday, September 18, 2009: A Wordly View

Someone the other day left a comment comparing us to 'global missionaries'. Wow, that is quite a compliment! I think that might be a bit of a stretch, but the compliment is humbling. I don't for one second want to compare our lives to the life of a missionary. Missionaries make such huge sacrifices to spread the word of Christ. They are very special people. But your comment is appreciated. Wow! It sure has made us think. So I checked out our blog site counter recently and looked at our last 100 visitors. Goosebumps! Our 150,000th visitor was from Edison, NJ. We get this information off of our's a look at a recent snapshot of the past hundred visitors:

Wherever there is white dot is where someone visited from (the red dot being the last visitor, green dots the last 10 and white is the last 100). Just a reminder: we don't know who the visitors are, only where they are visiting from. We are truly reaching around the world! India, China, Japan, England, Switzerland, Canada, Mexico, Alaska (OK, Alaska's not a different country but it might as well be!) Hey, do you think it was Sarah?! Na.

Speaking of comments and reaching around the world...all of us in the Christian family have a responsibility. Of faith, hope, and love, which one was the most important? Do you remember? Love. How about 'be humble and gentle' or 'love your neighbor' or 'be imitators of God', etc. My guess is that there are people reading this blog on a daily basis who don't know Christ or are searching for answers. If they see fellow Christians trashing each other it might be a turn off. In the 2 years we've had our blog we've only had to delete a handful of comments...usually a cheap plug to sell miracle pills or something. But the other day there was quite a nasty comment left toward another blogger who commented on our blog. If you read that comment we're sorry. We don't want to get into a situation where we're screening all of the comments. We do know other people who have had inconsiderate comments left and now they are forced to screen every comment before posting it. That is very sad. We don't want to have to do that. Unless offensive (or a cheap plug for some 'enhancing' pill), we leave every comment.

Like I said in my last post...we look forward to reading the comments and if we could respond to every one we would. It lets us know people are reading our blog and care for us. We just ask that if you read the comments and you disagree with someone, please don't use our blog to retaliate. We take the good with the bad. People offer a lot of advice based on their own situation. What works for one person may not work for another. All of us in the cancer family know that. But the only way to find out is to listen to advice and investigate every piece of advice. Do we listen to it all? yup. Do we try it all? nope. Like I said, what works for one may not work for another. Some we've already tried, some just doesn't work for us. The whole medical marijuana topic is kind of funny on the surface but it's real. Cancer is real. If it works, we will try it. Well, not "we", but Kristi. Well, if we make brownies I might have to try one. OK, OK, focus. I ever mention I'm ADD? So anyway, we love you all, thank you for reading, and please keep the comments coming! And if you must reply to someone's comment, send them an e-mail! :)

Remember, of faith, hope and love, LOVE is the greatest. Now go out and LOVE!

or adopt a pet

Wednesday, September 16, 2009

Wednesday, September 16, 2009: On The Rebound

We just wanted to get a quick update out to let everyone know we are doing much better. After making the decision to put chemo on hold we both felt a big burden lifted off of our shoulders. We have definitely felt the effects of all of your prayers. Kristi is also physically feeling a little better these days. Thanks for being such faithful readers and prayer warriors for our family! We'd like to be able to respond to everyone in person but along with dealing with cancer, school and sports are now in full swing! Every night we have either soccer, karate, piano, Cadets, etc. By the time we get the kids to bed we crash on the couch. Just know that we read every e-mail and comment and we feel truly blessed!

"I waited patiently for the LORD; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand." Psalm 40:1-2.

Sunday, September 13, 2009

Sunday, September 13, 2009: We Warned You!

Well, you can't say we never warned you. Right in the header of our blog we have the word "CAUTION". We realize that people who love us very much read this blog daily (our parents, siblings, closest friends). This blog was created for a way for us to journal this adventure; a kind of therapy for us. Through this journey there will be good times and bad. If you're reading this, you need to be prepared for things to change in a moments notice. We have become quite used to that over the past 3 years.

The past few weeks have not been easy and maybe you have seen a change in our postings. We can't put on fake "happy faces" all the time and pretend everything is wonderful or we wouldn't be real. Yes, we are Christians. We love God. We know God loves us. Never doubted it. Nowhere in the bible does it say if you become a Christian life will be easy. Quite the opposite actually. But one of the most wonderful things about having faith is knowing that God is always by our side.

Today was another tough day. I was on video duty for church this morning. Kristi made it to the 2nd service by herself. She left the kids home because they were too much for Kristi to get ready and out the door by herself. So Kristi sat with her mom near the back. About half way through the service Kristi broke down. She walked out of church and drove home. I caught her in the parking lot and followed her. When we got home we just laid in bed. We tried napping but just laid for about 2 hours. We talked a lot. Pretty much decided we're taking a break from chemo. Although we appreciate all of the advice, this was a decision we made (although I am intrigued my the medical marijuana idea. For me. I'll investigate). :)

While we were upstairs, Ashley was working on a bible assignment for school. Ashley is our oldest daughter. She is 12. We normally encourage the kids not to do their homework on Sunday, but this is what she wrote:

My Life
by Ashley Rogalske
"My life has been good but hard. In 2007 my mom got ovarian cancer. Ever since 2007 life has been hard for us. Her cancer has gone away a few times but it always seems to come back. I am the oldest child so I feel like I should do a lot of work around the house and keep watch of my younger siblings. God has been faithful to us by staying with us and being on our side. God has never left us and He never will. Gods faithfulness was great in the life of Joseph. God helped Joseph as much as he is helping our family right now. When Joseph's brothers threw Joseph in the pit and sold him to the midianite merchants (Ishmaelites), God was with him the whole time and never left him.
If you are ever having a hard time and don't know what to do, just take out the Bible and read. Here are some verses I found that help me.
Remember the wonders he has done, his miracles, and the judgments he pronounced. Psalm 105:5
Do not let your hearts be troubled, Trust in God, trust also in me. John 14:1
I sought the Lord, and he answered me, he delivered me from all my fears. Psalm 34:4
When times are good, be happy; when times are bad, consider: God has made the one as well as the other. Therefore, a man cannot discover anything about his future. Ecclesiastes 7:14 Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28
I chose these verses because when I read them, immediately I feel like everything is going to be okay and that God will never leave me and my family. I feel like I am free from worrying and everything will be okay. If your are ever feeling down or not so well, find verses in the Bible and that will calm you down. "

What do you say to that?! I just broke down and cried in her arms. I was so proud on one hand but so mad on the other. I believe this experience will ultimately make these kids better adults, but I feel like they are being cheated out of a part of life. This sucks. This really sucks. That's how we feel right now. Pray that we will be rejuvenated soon. Thank you so much!

Saturday, September 12, 2009

Saturday, September 12, 2009: Decisions

As long as I can remember I have been terrible at making decisions. Sometimes I really don't have a preference, other times I'm afraid of offending the person I'm with (that's the people pleaser in me), and there are also times I simply don't know the answer.

Every single day we are hit with decisions. As soon as my alarm clock goes off I have to decide if I have time to hit snooze or not. The agonizing decision of "what shall I wear today"? By afternoon I'm trying to decide what to make for supper . . . of if I need to make supper (can I pull off another day of "we're having cereal again tonight"?)

Quite often in life there are the "biggie" decisions that we need to make. What college should I go to? Should I go to college? Who will I marry? (thankfully that was a no brainer for me!) Is it time for us to start a family? Where do we send our kids to school? How can we continue to afford sending our kids to school?

And then every once in a while we are hit with those major decisions. Those life or death consequence decisions. We are there right now. We have actually been there for almost three years. I have cancer. I want it gone. How do we accomplish this?

We have for the most part followed the traditional route. We have seen the doctors. We have gotten second opinions. I have had surgeries, scans, tests, chemotherapy and so on. I have followed the rules and where has that gotten me? Well, it's been 2 years, seven months and twenty days (give or take a few hours) and I still have cancer.

If it sounds like I am bitter it's because I am. Through most of this journey I have been optimistic. Even though the odds have always been stacked against me I have believed that I would be in that small percentage of survivors. And I still do. As soon as I give up that thought I have admitted defeat and taken away any chance of surviving this battle.

Anyone who reads this blog also knows that I have had many times of just wanting to give up, times that I was at the bottom of a very dark pit and just wanted to stay there. I am not in a pit now, I am just tired. Tired of putting poison through my veins that just seems to be killing me along with the chemo. I don't want to give up but I want to find a new strategy - a new plan of attack.

Anyone who has been diagnosed with an illness knows that along with this comes a great deal of advice and opinions. Sometimes this can be overwhelming and other times it turns on a light bulb. It opens a new door. It starts the wheels spinning.

I recently was given some information on an alternative form of therapy. As I read through this I felt a strong pull. I felt like God was telling me to take a closer look. After doing some research of my own I have found out that this treatment is not available. In fact, it appears that it is not even legal to sell this vitamin in the United States. At this point I am not going to share what I am researching as I know that I will receive a great deal of opinions and right now I need to forge through on my own and make my own opinions. I am working with my oncologist on this as well. I still have a couple weeks before I am scheduled for my next round of chemo and many decisions need to be made.

That brings me back full circle to that dreaded word "decision". If I can't decide what restaurant I would like to eat at for supper how can I decide something that will effect my chance of survival? The verse I cling to is Jeremiah 29:11 "For I know the plans I have made for you" declares the Lord. He has planned my life from beginning to end. These plans have been made. Where I struggle is . . . what are these plans? Can I get a copy of them? I am so afraid of making the wrong decision.

When I stopped chemo in April of 2008 I felt God's peace and I know I made the right decision. I still believe that. Right now I need to find this again. The thought "seek me" came into my head and I searched Bible Gateway and this is what I found . . . . You will seek me and find me when you seek me with all your heart. This verse is Jeremiah 29:13 - just two verses from my favorite verse. Coincidence? I don't think so.

So right now we seek. We seek with all our heart. And we pray. And we know - God does have plans for us . . "plans to prosper you and not to harm you, plans to give you hope and a future".

Friday, September 11, 2009

Friday, September 11, 2009: Nobody Home

Read at your own risk. Faint of heart don't read.

If I said things were "OK" I'd be lying. It's 4:00AM and it's another sleepless night. Tick tock tick tock. As I sit here typing I hear the living room clock ticking away. Kristi is in absolute misery. She trades off extreme constipation with bouts of diarrhea. Throw in occasional nausea and constant fatigue and that sums up the last 10 days for us. Some nights as we sit on the couch I will look into her eyes (as she stares at the TV, not watching, but staring) - her eyes are open but nobody is home. Her expression is blank. It crushes me. Sorry. She says if this cancer ends up taking her in 2 years this is not how she wants to spend those last 2 years. I can't blame her. If it were me I'd want to be brought out to the 'back 40'. I can't even imagine the misery. She says she is not giving up her fight - and she's not - she has just been thinking a lot about 'reality' lately. She has been thinking a lot about quitting chemo lately. Then she asks me "what do you think?" Usually by this time of the conversation I'm numb. What does one say? I don't know. She says when she thinks of spending the next 2 years like this she gets emotionally exhausted. I responded by saying "when I think of spending the next 40 years without you I get emotionally exhausted". Sorry. That's how it's been the last 6 weeks around here. I'd put some specific prayer requests but I think you get it. Thanks. I'm going to go lay next to Kristi and the dogs now. Night.

Monday, September 7, 2009

Monday, September 7, 2009: A Little Better

Today was a little better than yesterday. Kristi was still puking this morning but hasn't thrown up since lunch. She's feeling a little better now. She is still extremely fatigued and ready to quit chemo again. Pico has been a nice addition to the family. He's really starting to fit in. Here are some pictures of Pico:

Papi and Pico keeping Kristi company as she rests. As you can see, Papi is still the favorite.

Papi and Pico keeping me company as I read

Pico is very curious

Sunday, September 6, 2009

Sunday, September 6, 2009: Well...

Guess I spoke too soon. The nausea hit today. Kristi has had a bowl of oatmeal the past 2 days. She tried crackers and a 7-Up and well, it all came back up. She has been nauseous all day. Please pray that this is a short lived set-back. It gets really hard to understand how this chemo is "helping" her. She really struggles with this...and so do I. Please pray for reassurance that this chemo is the right thing to do and for energy for the 2 of us.

Saturday, September 5, 2009

Saturday, September 5, 2009: Not Much Nausea

So far so good on the nausea side. The new meds Kristi is taking seem to be working! The down side is that they make her very tired. She has slept most of the day today but seeing a tired mommy is better than one throwing we're praising God for the new meds! I'm trying to motivate myself to go out and finish yard I guess I'll go walk the dog!

Thursday, September 3, 2009

Thursday, September 3, 2009: Plans

Once again the "for I know the plans I have made for me" did not line up with "for I know the plans I have made for you". God's plans always trump our plans.

I thought I had all the details worked out. Bring the kids to school. Meet my mom at my house so we could switch cars and then go pick my dad up and drop Emily off after that. This way my dad could drive me to chemo with their car and my mom would have the van to pick up the kids later in the day. A little bit complicated but we made it work.

I got as far as bringing the kids to school and getting back home. That's where the plans took on a life of their own. I was giving Pico his antibiotic and pain medication in a piece of cheese and Papi decided to jump in and eat them instead. At first I was thinking he would be fine - it was just a quarter of each pill. Then I realized that Pico weighs twice as much as Papi. I called our vet to see what I should do and they told me I needed to make him throw it up. Thankfully my mom was already there so she helped me give Papi a teaspoon of hydrogen peroxide (which is what the vet told me to do). I had to do this every 2 to 3 minutes until he threw up and if we hit 15 minutes with nothing we were going to have to bring him in. Thankfully he threw up after the second dose.

As we were dealing with this I was on the phone with my nurse. They had my blood work drawn yesterday at my doctors appointment and my counts were in. I was hit between the eyes with the news of my new number. I think she said 152 or 151 - Brian thought I said 156. I just remember hearing one fifty and then I kinda blanked out. Seconds after this Papi throws up on the carpet under the kitchen table.

My wonderful mother tried cleaning it up but didn't have much paper towel in her hand so she was rather grossed out and almost threw up. At this point it was actually comical. It was the perfect distraction to the bad news. Papi recovered quickly and I found the pills in his, well, you know.

After the mess was cleaned up we continued on with our day. Everything else went according to plan after that. Oh wait, Emily decided it would be a good morning to scream and cry and cling to my neck when I dropped her off at a friends. Thankfully this was a great friend who knew to take her so we could make the break and she was fine shortly after. The chemo clinic was pretty busy and everything was running behind. I should have known that would happen and factored that into the plans!

I'm still kind of surprised by the number and bummed. I may have a very resilient case of cancer but I also have amazing friends and family. I have parents who made arrangements so that my dad could spend the day with me at the clinic and my mom could pick up Emily this afternoon as well as the kids from school. A friend of mine watched Emily for the day. Another friend brought an awesome supper over (and meals for the freezer too!) and then yet one more friend stopped by tonight with a plate of brownies! We even had a friend bring a plate of brownies yesterday which sadly enough we inhaled by that night :) We are so well taken care of!

Pico has only been with us for three days and I'm amazed at how well he is adjusting. He is such a sweetheart!

Life is hard . . . but God is good.

Thursday, September 3, 2009: CA125 Results

Well, not what we were hoping or praying for but "it is what it is". Kristi's CA125 level jumped to 156. Dr. Downey said not to be surprised if it goes up but we were hoping he was just being cautious. He will continue the current chemo for a few more rounds before making any changes. Fortunately Papi was misbehaving this morning (he ate Pico's pills) so that kept Kristi distracted. She was more upset about that than the CA125 results! Please pray for more distractions and a side effect-free chemo. Thanks!

Wednesday, September 2, 2009

Wednesday, September 2, 2009: Pico!

Sorry we didn't update last night with Pico pictures . . . it was a busy day! Pico is full of energy and we are thinking he still has a bit of puppy in him. He absolutely loves Papi! Unfortunately he loves him a little too much and isn't giving him any down time.

Initially he only wanted to be with Papi and he didn't have much interest in us. Today he has warmed up quite a bit to us. Doesn't he look just like Papi? Most of the time they are running around and playing. They wore themselves out and took a short nap on Brian We just weighed Pico tonight and he is 19 pounds - he's very solid. Papi on the other hand is 9 pounds - he's just a little runt.

My appointment with my oncologist today was uneventful which is good. They did give me a new prescription for a different nausea medication which hopefully means I won't get as sick this time. My chemo appointment is tomorrow at 11:00.

Some prayer requests:

We think Pico is going to be a wonderful addition to our family but we still have a bit of a transition phase. He is rather protective of Papi and is still getting used to being around people. He has snipped at a a few people so we are limiting visitors until he gets used to us.

Brian has still been struggling with his fatigue and it seems to have gotten worse recently. It's so hard to understand how someone who eats so healthy (well, most of the time anyway!) and works out every day can have this much fatigue. Pray that some day we can find a cause for it and for patience and strength as he waits.

Prayers of praise for a great first few days of school for the kids! They all have awesome teachers and are adjusting better than I expected to the new routine. They are pretty excited about a 4 day weekend though :)