Saturday, October 25

put wings to my words

I feel I must address something. Of course I covet prayers. Undoubtedly, God is listening and acting because of faithful prayer warriors and even the ones who breathe a simple prayer only once. That prayer counts! There are no amount of words available to express how much your prayers and faithfulness mean to me. I also love and appreciate the encouragement you've given me over the years. Your positive words lift my spirit and help me to focus on the cup being half full instead of half empty. And again, words fail me. If you could take all of the words and synonyms for thankfulness, gratefulness, etc. and then multiply their meaning by a million, I don't think that could even come close to expressing how much I appreciate the blessing you've been to me and my family. So let my simple "thank you" be taken to mean a billion emotions of gratitude for all you've done.

I just have one request. When people say that I'm amazing and inspiring and they look up to me and wish they had half of my faith and I'm so strong and wise and courageous and how incredible I am.....well, I sometimes get uncomfortable. Don't get me wrong. I LOVE hearing about my characteristics and getting to know how other people see me. But I can easily get puffed up with so many accolades tossed at me. You see, my love language is Words of Affirmation. I feel the most loved and cherished when people see something (anything) good in me and share it with me. But I also recognize the danger in this. I must guard my heart, lest I be tempted to be filled with pride. Please know that if you see anything good in me, it's the Father's doing. I am nothing but a broken body, worthless on my own. I've always said of my blog, "I just spew out whatever is in my head or whatever we're going through." It's therapeutic. Sometimes God will place a passion of some sort in my head and I feel led to write about it. And other times I just share what's going on medically.

I like to think that GOD is the One to give my words wings to fly to those who need to hear something of what I've written. I'm nothing special. Just a girl who likes to write and follow Jesus. God gets all the glory if anything I write inspires you or strengthens your faith.

I'm not saying to never tell me how a post inspired you or that you wish you had a deeper faith like me. I love it when I hear praises about my character. Those sincere words encourage me and lift me up. They make me feel like I'm doing something to touch the lives of people I don't even know. But please. For me. Please don't think I'm "all that" and put me on a pedestal. It's God. He's the One who has done (and is doing) a good work through me. He's using me. It feels more than incredible to hear from you and know that He's using me. I must remind myself that God's praises are really all the accolades I need. I'll do my part to pray that your words of affirmation do not give me a swelled head. That's my "thorn in the flesh"—to desire praise and recognition and acknowledgement. This is something I've learned: I must give my pride to God on a regular basis. Only He can make light out of darkness. And humility out of pride.

Thursday, October 23

being honest with the kids

So Dale and I decided to keep the kids informed about my treatments the other night, rather than wait. We know that some of their friends read my blog and didn't want them to hear anything bad from someone other than their parents.

Boy, oh, boy. I'm an emotional wreck. First of all, I always knew that my two children are as different as night and day. It was never more evident than three nights ago. First I took Marielle aside and explained about starting a new chemo drug and how this is the last chemo drug that's available. We surprisingly had a very mature conversation (for about an hour). She asked me if I was going to be buried or cremated. That led to quite the discussion. I asked her if she'd rather me die in the hospital or at home. Another great conversation arose from that. We talked about me being Mom #1 and her having a Mom #2. I shared with her my hopes and she shared with me her concerns. I explained that God gave me the honor to birth her and raise her up in her child years, given her a strong foundation in the Word and teaching her how to live out that faith. At one point she even said that she's glad I got cancer, because it has deepened her faith and made her rely on God more. I was floored. She realizes that there will always be hope and we can certainly pray hard that this last chemo will be super effective and last years, not just months.

Whew. I think that went better than I could imagine.

Next I brought Josiah up. After I could only get a few words out, I saw tears dripping down his cheeks. Oh, my poor, sweet, sensitive boy. My heart started breaking. I pulled him close and let him cry on my shoulder. He said, "What am I ever going to do without you?" and "No one could ever replace you." Oh, dear. I wasn't prepared for the emotions. I cried along with him. I talked very positively about Mom #2 and how exciting it's going to be. Mom #2 will probably do things that I don't or can't do. Just think about having meals cooked on a regular basis and eating together as a family. Imagine Mom #2 taking you to the park, to the movies and to all the places that I don't take you anymore. You'll be able to go on trips, to church, to the stores and many other places without cutting it short because your mom needs to go home and rest nor wondering if your mom is even going to attend. We even discussed the possibility that Mom #2 might have children of her own, and wouldn't that be an adventure? He asked, "What if Mom #2 has different rules?" Ahh, the things that go through the minds of kids! I assured him that things will change a bit. But most of her rules wouldn't be that big of a deal—like changing the bedtime or doing homework before dinner or after dinner. I told him that the big decisions would be discussed between both of his parents and it would be THEIR unified rule. He seemed to accept that. We also discussed heaven and how I wouldn't really be gone. If ever he wanted to get close to me again, he'd just have to grow closer to Jesus, because that's where I'll be.....holding on to the hand of Jesus. I want to leave him with that image always.

It was an emotional night. I'm glad the kids are aware of the status. I had to leave Josiah on a good note, not willing to just let him go with sad tears in his eyes. So I pepped up and said, "Ya' know what? I'll start this new chemo on Friday and let's just pray that it works. Let's pray that it'll shrink my cancer and I'll get to be your mom for a very long time to come. There's always hope."

So that was a little insight about the kids' reactions. Dale? He's a little trickier. We both talked a bit. Both of us have known these past 4.5 years that there will come a day when there will be no more treatments available. I've been extremely blessed and fortunate to still be alive and kicking for 4.5 years after Stage IV diagnosis. Many people only live a few months after such a diagnosis. I praise God SOOO much for giving me these years.

Dale and I are sensing more the urgency to get things in order. He wants my wishes for a Memorial typed out for him. And we both want to schedule another family photo shoot while I'm still able to get out. Then there's digging up important documents, finding a way to transfer the responsibility of bill-paying and budgeting from me to Dale. Oh, he's gonna love that (—said sarcastically). Anyway, it seems there's always something to do or think about or prepare for or talk about. It can be a bit overwhelming. Yet, all of that stuff has to be put on the back burner when the kids need help with homework, have lessons to go to, or need to talk. Throw in the fact that I need to rest quite a bit during the day (and sometimes in the evening), and it's hard to find time to "prepare."

Monday, October 20

the energizer bunny

No. Not me. I am definitely the opposite of the energizer bunny. But I feel like this cancer was given a fresh set of batteries and is now going crazy inside my body.

I had a productive meeting with my oncologist today. The main conclusion to our discussion is that the cancer is aggressively growing and spreading. The extreme pain in my hip/leg, the multiple bumps that appear just under my skin—all over my body (that keep increasing in number daily) and the large tumor on my jawbone are all indicative of cancer growth.

What's the treatment plan?

There will be no more MRIs or PET scans in the near future. My oncologist said that in about 6 weeks, we'll know if my new chemo is working or not based on what my body is doing. Has the pain in my hip lessened? Has the swelling on my jawbone decreased, increased or remained the same? Have the bumps under my skin stopped multiplying or decreased? The only "test" I have coming up is on October 31st I will have one of the bumps under my skin biopsied. My doctor is pretty sure that the bumps are the result of cancer spreading to fatty tissue. I was afraid they were skin mets. If so, then I'd say, "I have breast cancer that has spread to my bones, liver, brain and skin." The bumps are still cancer mets, but they're below the skin. So a biopsy will confirm if the bumps are indeed cancer-filled.

Even though I won't be getting anymore scans in the near future, we're going to move aggressively with treatments. As soon as we get insurance approval, I will begin a different kind of chemo called: Ixempra. This is supposed to be a great chemo with less severe side effects. It's specifically designed for patients who have undergone treatments with multiple chemo drugs that have failed. Ixempra is sort of saved for last.

That's the bad news.

This is my last chemo to try. If/when it stops working, there's really not much else out there that would work. Needless-to-say, this is a very sobering thought. Of course I'm praying that Ixempra will work like crazy and eat up all the cancer in my body. And I know that God's not through with me yet, so I'm praying that He still has YEARS of purpose for my life.

So those are the facts. Told with as little emotion as possible. I'm still trying to process everything. I'm sure I'll write another post about my feelings and how I'm handling the news. The stark reality is that if Ixempra doesn't work, then the cancer will continue to grow and spread and I won't have much time left. Unless God chooses to heal me this side of heaven, I'll be seeing Him before too long. Ach. Not right now. No tears just yet. One day at a time.

One last thing. If you are a parent or teacher that sees my children regularly, please do not say anything about this being my last chemo to try. Dale and I will find a time to tell them and it may not be until after we find out if Ixempra is working or not. Thank you!

Friday, October 17

a quick update...

I know there are many who are praying and concerned, so here's a quick update.

I'm still in gobs of pain. I couldn't get in today for an MRI, so they're scheduling one for next week. I don't know the day or time yet.

I was ordered a new prescription for pain control, but they couldn't call it in. I either had to pick up the script or have it mailed to me. Ugh. I can't drive, so what could I do? It was too close to closing hours before they got back to me. So they will fill the prescription at the pharmacy at the Cancer Center. I have an appointment Monday with my oncologist, so I'll just pick it up then. 

In the meantime....

I guess I'll have to tough it out this weekend. I stayed in bed ALL day today, and still was in pain. But I tried to store up enough energy to go out to eat dinner with Dale and the kids tonight. It was so wonderful to get out and do something with my whole family. But it took a long time to get our food and my back was starting to ache. I had to lay my head on the table until our food came. Still...I cherish the time together and getting to welcome Dale back home.

Thursday, October 16

tears of pain

Have you ever cried in front of your children? I'm not talking about tears from watching a hallmark commercial, or tears of joy. I'm talking about really crying, sobbing, whimpering and trying to hide it, but they know. They hear.

I wasn't able to stop myself. This evening, my kids both came to the basement as I was writhing in pain. And crying. The pain in my right hip/pelvis/thigh was relentless. And I couldn't stop the tears.

It started by needing to pick up the kids from school. I tried to use my left leg as much as possible while driving, but am not comfortable using my left leg on the gas pedal. So I couldn't do anything but drive with my right leg. Painful. Then I had to take Marielle to her violin lesson. I always stay in the car and read while she plays. But today I had to go to the bathroom really bad. The only way to get to the bathroom is by going up a narrow hallway of stairs. It was then that I lost control and balance in my right leg. I almost fell down the stairs. How embarrassing.

Once we arrived home, I was in excruciating pain and unable to walk without numbness or weakness and pain. I still needed to take Josiah to piano lessons and I wasn't comfortable driving 20 minutes to and from, in the dark, with my leg so weak. Luckily a friend was available last minute to take Josiah. This freed me up to take a strong narcotic. I figured, even if it didn't cover the pain, at least it would knock me out. Well, it took a long time to take effect, so in the meantime I tried to make myself comfortable. No such luck. Even now (5 hours later), no matter what position I'm in, I can't relieve the pain. It's constant.

So I cried. I tried to be quiet, but the next thing I knew, there stands my kids asking me what they can do. Sweet, sweet kids. So helpful. Josiah didn't want to leave me, until I made him get ready for his lesson.

I was at my wits end, debating whether or not to go to the ER. I know that I need an MRI of my right hip/thigh, but even more, I wanted something to stop the pain.

Dale has been away all week, but will return late tomorrow morning. I think I can wait until he gets here. In the morning I'll call my doctor and schedule an MRI. I just don't know what's going on. Nothing abnormal showed up on my last PET scan NOR the x-ray of my hip just 2 weeks ago. But there is definitely something wrong.

In the midst of all of this, I have a HUGE praise. I no longer have mouth sores! My mouth doesn't burn anymore! This is huge. There's no logical reason why my mouth has healed, except for God taking that horrible side effect away. I can eat now! Thank you to everyone who has been praying specifically for my mouth sores to heal.

I did have an x-ray of my jawbone on Monday. The bumps on my bottom right jawbone are getting larger and are indeed cancer. This area of my jaw is noticeably swollen. What I'm not sure of, however, is if I have osteonecrosis of the jaw (a deteriorating of the bone). I know this sounds vain, but I'm praying the cancer doesn't get bigger or spread on my jaw bones, causing tooth loss and disfiguring. Every day, my jawbone and gums hurt. There's a constant foundational pain, but when I accidentally press anywhere near the area, the pain is indescribable. I'm finding it easier to eat on my left side, for when my teeth come in contact on the right side....well, just ouch. When I lay on my right side, I must arrange my body and pillows to not press on that area.

So even though I'm really struggling with pain right now, I am SOOO thankful that I don't have to deal with a painful, burning mouth. I can brush my teeth and brush like normal. No need to rinse and wait for the lidocaine to take effect before eating a paltry bit of food. Hopefully I can start gaining some weight. Folks, I need to weigh around 100 pounds and right now I'm at 86 pounds. Not good.

I don't mean to be complaining, but I know that some of you appreciate knowing specifically what to pray for. Immediate prayers are for healing in my right hip/thigh area. Then the cancer in my jawbone. And always, for healing and strength to make it through each day.

Well, I'm going to try to sleep now. I haven't been successful getting a full night sleep in many days now. Hopefully I can break the streak tonight. Thanks again for praying so faithfully.

Thursday, October 9

hiccup

It seems that recently my circle of acquaintances is being hit with breast cancer. It may be a friend of a friend or a family member of a friend that I don't know, but I'm hearing more and more about people being newly diagnosed with breast cancer. This post is for you.

I know it's overwhelming. Too many questions. Too many tests and appointments. Living with the unknown and unanswered questions. Figuring out the multiple specialists and what they do. It's all too much. Too much to deal with all at once.

Almost 11 years ago, that was me. I was young and naive. I basically took it all in, took notes and took my physicians' point of view. After all they were the professionals. I was just a numb person going with the flow and letting others schedule my tests and appointments and surgeries. My schedule became centered around these events.

I know that everyone handles trials differently. We are all unique with our personalities, backgrounds, beliefs, support systems, and environments. I don't think there's one right way to cope, yet I get saddened when someone doesn't know how to cope. Over the years I've mentored a couple of dozen women who were new to the breast cancer world. I've seen numbness, shock, hopelessness, and depression in too many. Perhaps my own experience can strengthen someone who has just been dealt the blow of a bad diagnosis or a loss of any kind.

I was lucky. During my breast biopsy, the doctor told me, "We'll get the results in two days, but I'm telling you now that it looks like cancer." Wow. I wasn't prepared for that. I was only 28, with a 2-year old and a 4-month old. Cancer was something I knew nothing about as I didn't know one single person who had cancer. My first thoughts were images of me lying on the couch and not being able to move and just wilting away. I think that television and movies gave me those images.

I was fortunate to have 2 whole days to prepare myself and my husband. It "could" be cancer, but then again, perhaps it wasn't. I had a bit of hope to cling to, while preparing myself for the worst.

Of course it ended up being cancer. That Friday (Friday the 13th of February—right before Valentine's Day), was the day my diagnosis was confirmed. I didn't break down, but tried to take extensive notes. When I got home, I think I cried for about 10 minutes and then I was done. I didn't cry again until March 11th when I was told it wouldn't be wise to have anymore children as my cancer is very aggressive and feeds on estrogen. Boy, did I grieve for the children I'd never have and for the grandchildren I'd never see. Since then God has replaced my desire for a large family by giving me such peace and contentment for the two kids I have. There's never been a longing to have more children. I'm so glad God filled in the hole in my heart with His presence and love.

Back to the night I was diagnosed....

I wrote in my journal and felt the presence of God. I prayed. I prayed hard. Suddenly my perspective shifted. I was determined not to let fear of the unknown drive me. I knew that life still must go on. I pictured this season as a sort of hiccup in my life. I knew that when I'm 50 years old, this trial would be but a small hiccup in the grand scheme of my years. It gave me perspective. Yes, it all can be so overwhelming as we go through the storm, but knowing that life WILL go on after the storm (and even in the midst), kept me from getting depressed and all caught up in my world.

Since then I looked for the good in all things. I couldn't wait to not have to shave my legs for a few months, and I looked forward to picking out and wearing wigs. Hey...who wouldn't want the perfect hair-do every day??! I could wear a hat and then if the doorbell rings, I'd just slip on my wig and be ready to go. My friend and I had a blast wig shopping and picking out cute hats and scarves. I actually couldn't wait for my hair to fall out and I could sport my new hair. And since I'm an open book here on my online journal, I'm not embarrassed to say that I could NOT wait to have perfect breasts and never have to wear a bra again. I must say, that's been one of the best things to come out of all of this. I can wear cami's and strapless dresses with no problems. No more safety-pinning my bra strap to my shirts. Low cut? No problem! Ahhhh....yes. I love it.

Praying for God's perspective was the key to my coping. The more I prayed, I began to see this as a blessing. I sort of felt honored that God would allow me to go down this road and prove my faith in Him. I felt connected to Job as his life crumbled before him, yet he never stopped believing and loving God. It was as if satan approached God and said, "Elizabeth has just recently surrendered her life—ALL of her life—to you. But when something bad happens, just watch her fall." I feel like God must have had faith in me to rise above cancer and place my faith in God. Wow. What an honor. I'm sure this must sound crazy to some.

So throughout the next few months, I grew closer and closer to Jesus Christ as I had to place all of my fears and worries and pain at the foot of the cross. I wouldn't trade those months for anything. It was so glorious to actually walk side by side with Jesus. I would picture Him at my side while I rested on the couch. I would ask Him for strength to get up, just to go to the bathroom. While I sometimes felt like I was being buried 6 feet below, I was living sky high in the clouds as Jesus carried me along.

During the middle of my chemotherapy sessions, I read a book written by several young breast cancer survivors. At the time, anyone pre-menopausal was considered young. There just wasn't much data about women in their 20's getting breast cancer. Of course that was 10 years ago and things have changed and unfortunately we're hearing more and more about women getting breast cancer in their 20s. Anyway, I shouldn't have read this book. After hearing story after story, it became a reality to me that my little "hiccup" may indeed return. I didn't want to think about it, but the possibility of recurrence wouldn't escape my mind. I found myself getting a little depressed and knew I didn't want to go down that melancholy road. So I prayed. As the days passed, once again God got ahold of my mind and transformed my thoughts into those that are eternal, not earthly. I confidently shared that if my cancer ever came back I knew it wouldn't break me. I knew that I wouldn't be alone and that there was nothing to fear.

So for the 6 years of remission that followed my original diagnosis, I lived with little to no thought of cancer. I refused to let myself worry about recurrence. My oncologist told me, "With every headache you get from now on or every ache and pain, think nothing of it. Now if it persists for a couple of weeks, we'll get you tested." It was the best advice ever. Once my treatments were over, I began life as normal. In fact, 2 weeks after my last chemo treatment, I built a bench for our breakfast nook!

And then when the cancer DID come back 6 years later, I knew how to cope.....by clinging to Jesus with every ounce of my being. And as difficult as it is sometimes, I still feel a bit honored and my faith has grown even deeper. How can something be bad when it draws me closer to God and changes me to be more like Christ? It's the best!

My friends, no one knows what the future will hold. No one except God, of course. Jesus Christ is the One and Only Solid Rock we can depend on. There's no need to waste precious time and energy in being afraid. As the seasons move from one to the next, this too shall pass. We can only pray that our faith will deepen and God will be glorified.

Monday, October 6

side effects and blessings

It's time to play catch up.....

The past week has had its ups and downs. In other words, it's been a pleasantly normal week. It took a few days for my blood transfusion to kick in, but now I'm finding a bit more energy. Thank goodness for blood!

I had a week off of taking the chemo pills, but I still suffer from the side effects. The following picture is horrible, I know, but this is one side effect that bothers me and gets worse daily.



This is called "Hand and Foot Syndrome" and is a common side effect with several kinds of chemo. It's a wonder that I haven't developed this before. My left index finger is the worst, and now my other fingers are beginning to crack and bend. The tips of my fingers are red and tender. They sort of look like plastic. I tried to take my drivers license out of my wallet today and almost cried. I couldn't do it. Things like opening a sealed envelope or a can of soda cause too much pain. So far my feet haven't been effected, thank goodness. How do I stop it! I'm treating my hands and feet with a special gel-like lotion and covering up with gloves and booties at night. And I put bandaids on during the day. I'm asking myself, "Why couldn't one of the chemos that has less side effects be the one that works, instead of this one?" I keep telling myself, "At least, after all these years, 13 different chemo drugs, 4 sections of my body getting radiation, brain surgery, too many blood transfusions to count, and multiple hormone therapy treatments, it's a miracle to find a treatment that is working on BOTH the cancer in my bones AND liver. Now....if I could just get a handle on these side effects, I'd be one happy camper.

The other BAD side effect I have is with the burning of my mouth. It's so horrible. The other day, Josiah came up to me and asked if I was punched in the mouth. My gums were so red, he thought they were bleeding. And actually, every time I brush my teeth, I find myself spitting out lots of blood. Yet since my gums are starting to recede, I have to take super close attention and care with my teeth. It's so difficult when just opening my mouth hurts, let alone touching everywhere with a soft brush and various substances (numbing mouth rinse, tooth paste, etc.). And flossing? Double-ouch....but necessary.

Those are my two bad side effects. Next on the list is fatigue—of which I'm no stranger to.

So last week, I was still very weak, but I really needed to get our basement storage room cleaned out. My motivation to clear the junk out, was so that I could get to my Fall and Winter decorations in the very back. Just the thought of all that work made me whimper and procrastinate. But no more! So I asked a few friends (they are truly angel friends) for help. Boy, did they come through! I figured it would take a few days and many hours to make a dent. But in a little less than 2 hours, our storage room was clean!!! I'm still in shock. Take a look:



I should have taken a "before" picture, because the photo above doesn't do it justice. Trust me. It was a fire hazard—stepping over or on top of junk just to get to the freezer. I think Dale might even be happier than I am, because now he can actually get to the furnace and breakers. That room has been weighing on me for years. Whew! What a load has been lifted. My friends were lifesavers and cleaning machines! It was amazing to sit back and watch the flurry of activity while I divided things into 3 categories: Trash, Donate, Keep. Oh....it just felt so good to trash and donate, I'd say, about 85–90% of what was down there.

It took me a couple of days to recover from all the sorting, cleaning and putting up the Fall Decor, but it was worth it. So I pretty much stayed in bed for a good chunk of the weekend. I was pleasantly surprised to see that I had company:



My bed has been invaded by this cuddly lump of cuteness. Of course I've been ecstatic. Our cat is so finicky that when she plants herself somewhere (usually away from people), there's no moving her. To find her in bed at my feet has been so deliciously heart-warming. I just don't know how else to put it. She's just so cute, I want to eat her up and savor that cuteness.

Well, now I think you're all caught up on the happenings of my life this past week. There is one thing that pops out at me from looking back at my week: I live a fairly normal life. After all, what is normal? No two families are alike. All families have their seasons of trials and moments of pure joy. In the midst of the everyday routines and responsibilities, we are thrown blessings and curses. But the 'everyday' must still go on. Live your life fully as you journey down your own unique path.

Monday, September 29

my day

What a crazy-filled day I had. I usually try not to plan or schedule anything on Mondays, as I need the day to recoup from the weekend. But I had to get up at 6:30 this morning, make myself presentable (which seems to take twice as long as it used to) and drive the kids to school at 7:30. I had an appointment at the school at 7:45 and although it's way too early for me, I was SO glad to be a part of the meeting. I met with the resource teacher and almost all of Josiah's teachers before school to discuss how Josiah learns best. We came up with a plan to alter some of his homework to be more efficient and hopefully remedy some of his test-taking anxiety. Everyone is in agreement that it's most important that Josiah learns the material instead of just doing busy work that takes him 3 times as long to do and doesn't teach him the way he learns best. Hopefully he won't continue to have hours of homework each night. And even better....I won't have so much homework. It's draining on me.

If I haven't said so before, "I LOVE Peoria Christian School." After much prayer and looking around, I know that God had directed us to end up at PCS. I am just floored that his teachers would take 30-45 minutes out of their busy schedule to discuss one single child. It made me realize just how much the teachers want every child to succeed. 

After my meeting, I couldn't go home and rest (like I SOO wanted to do) because Dale was bug-bombing our basement. So I popped into Dollar Tree and then grabbed breakfast at Hardees. I had an appointment with my oncologist at 10:45. I arrived at 10:00 and had a nice little nap in the car before heading in.

Because of pain in my jaw and a noticeable bump on the bottom right jawbone, I was told not to get my monthly zometa treatment. Evidently zometa can cause osteonecrosis of the jaw. Also, because of my low red blood cell counts, I'm anemic and so I'm going into the hospital bright and early tomorrow for a blood transfusion that will last about 6-8 hours. Lucky me. Actually, I'm rather looking forward to it. I usually just rest at home all day. But tomorrow I'll have a change of scenery. I'll have my own room, bathroom, adjustable bed, tv and plenty of assistance —not to mention a free meal!

Saturday, September 27

cancer news and date night

I got some great news about this cancer I carry with me. The MRI of my brain showed no new spots or growth! So far the cancer that is there is behaving itself and remaining stable! This is just fantastic news. Now I don't have to endure chemo through my spinal cord.

Dale and I went out to celebrate by having a date night today. It's been awhile since the two of us have gone out alone. We went to the Riverfront for the Fine Art Fair. It was amazing to browse by the many tents displayed with glass vases, pottery, paintings, jewelry and sculptures. But the best part of the date was sitting back, in the shade, next to my man, closing my eyes and listening to a live jazz band. Ahhhhh.....I was in heaven.

It was such a treat to take an hour or so out of our busy day to relax together. I was thoroughly impressed by everything from the art displays to the live jazz. And the friendly people, great food (notice the strawberry slush), and gorgeous (in the shade) weather made for a very memorable date.

Oh! And if you hadn't noticed, this was the first day that I bravely ventured out with no hat or scarf. It's a good thing, too, because it was a HOT day. I'm sure my scarf would have been drenched in sweat if I had worn it. I still don't feel quite comfortable going scarfless permanently, as I wish my hair was slightly longer. But we'll see what I feel like doing for church tomorrow.

I'm still quite fatigued, which is probably the worst side effect of chemo. I just get so drained when I walk around and do things—even small things. And my mouth sores (which aren't really sores at all—more like a severe burning all over my mouth, lips, gums, tongue, roof, etc) is starting to come back. My fingertips are still sensitive, hindering me from doing simple things like opening up a band-aid. And my fingernails are not a pretty sight.....all a little deformed. Let's see, the other REALLY bothersome side effect (either of chemo or cancer, itself) is my right hip. It really hurts when I walk and is even painful in bed. I have to get creative about my positioning in order to relieve pressure on that hip or leg. We took the scooter today to the Riverfront and it was a blessing. I may just need to take it to church tomorrow. We'll see.

Have a great Sunday, everyone!!

Saturday, September 20

love/hate relationship

I resumed taking my chemo pills yesterday after almost a 3-week break. I have a love/hate relationship with this chemo. I love the fact that they seem to be helping to stabilize the cancer yet I hate the side effects. I've been very nauseous, fatigued, drained and vomited today after taking my pills. I'm trying to take it slow tonight, so I can take the remaining dose without gagging and vomiting.

Dale drove to Nashville, Tennessee this morning to go to a friend's wedding and won't return home until late tomorrow. After feeling so crummy today, I made arrangements for another family to take the kids to church in the morning. I really hate that I wasted a perfectly good Saturday and time with the kids, by being sick and in bed all day. It seems like everything just drains my energy. Thankfully, the kids started working on laundry even before I woke up today. Unfortunately, 2 loads remain undone because one of the kids saw a spider in the basement and neither would go down and finish the loads. Oh, the drama. Such screaming and yelling and crying, because neither would go to the basement to switch out the laundry. They wouldn't even go together. I gave up. It's not worth the worry.

We have a full week coming up with dentist appointments for the kids, music lessons, and half-day of school on Thursday. I hope I'm lucid enough to participate, drive, help kids with tests, etc.

I don't know if I'll write for a few days or not. I have a brain MRI on Tuesday and should get the results by Thursday or Friday. I'm going to go to sleep now. Night night....

Saturday, September 13

love me some good news

I received the best news yesterday at my doctor's appointment. My latest PET scan showed that overall the cancer has either decreased in activity or remained stable! There was only one spot (in my liver) that showed an increase of cancer activity. But the other spots on my liver were improved.

Sooooo......

I'm staying with this chemo pill (Xeloda) for awhile longer. Since my mouth is finally starting to heal and I'm gradually getting more strength back, I'm going to wait another week before resuming chemo. And he decreased my dosage slightly. I was hoping for a greater reduction of dosage, but he's afraid to mess too much with a chemo drug that actually works. For those of you who aren't familiar with the progression of stage 4 cancer, the more chemo treatments one has, the less effective chemo is overall. Since I've been on 13 different chemo drugs over the years, it's a miracle to find one that is actually working. I have no one to credit but God who hears our prayers. The fact that I'm up and around and somewhat "normal" is a great testimony to the power of prayer.

In other news, what about my brain?

Well, I have a brain MRI scheduled for Sept. 23rd. And then I'll see my oncologist again on the 29th. Depending on the results of the MRI, we'll know if we need to resume the brain chemo or can stay away from it for a little while longer.

I guess that's about it.

My parents made a very last-minute visit late on Thursday night. My mom had her blood tested a few months ago to see if she is the carrier of the damaged gene that I (and so far one of my three sisters) carry. They went with me to my appointment and were able to pop into the genetic clinic and find out the results. My mom DOES have the damaged gene. It really doesn't mean anything for us, but now we know how to move forward with regards to our children. My older sister (that also carries the damaged gene) will be monitored more closely because she's a little more susceptible to getting breast cancer. BUT just because she carries the damaged gene, doesn't guarantee that she'll get cancer, because it's not a specific breast cancer gene. I don't fully understand it, but it's just knowledge to monitor her closer. AND our children will all need to be tested when they each turn 18. Marielle is concerned, but I told her that she's in the best possible place. She's going to be well monitored, so that IF she has the defected gene and IF she ends up with cancer, it's going to be caught extremely early and she won't have to worry about having chemo or radiation. And she's not guaranteed to even be a carrier. My youngest sister tested negative for the damaged gene, but my third sister has yet to receive her results. I really don't want Marielle to worry—especially because there's nothing to worry about at this moment. There are a lot of "Ifs" that need to happen before she even has to give it a second thought. I really hope I eased her mind.

Anyway, it's been nice having my parents here for a day and a half. Wish it could have been longer.

Dale is taking a day trip to Chicago to see some friends in concert. So he won't be back home until probably after midnight. I miss him when he's gone, but I'm looking forward to pizza and a movie with the kids.

Bye-bye, all!

Friday, September 5

what the doctor says

No more chemo! —Well, at least for 9 more days.

I met with my oncologist today and he doesn't want me to resume this particular chemo drug until we find out if it's working or not. If we DO find out that this chemo is effectively working on the cancer, then I'll just take it at a lower dose.

I have a PET scan on Tuesday and then will meet with my oncologist once again this coming Friday. Hopefully my side effects will have a chance to go away (or at least lessen) and I'll start gaining more energy as well as weight.

I want to thank everyone that has contacted me privately about trying different things for my mouth sores. I want to let you know I've tried EVERYTHING and nothing has worked. I was hoping my doctor could give me a prescription for something, but he said that nothing will work, short of ceasing the chemo. It's a bit of a blur, but he said something about the damage being done on such a deep cellular level, that anything I take wouldn't actually heal the problem (same with my fingertips).

Also, I have a very sensitive stomach and can't hold down any special nutritious or protein drinks. Thanks for the advice, though. I really don't drink much besides water and the occasional lemonade or slushy. I even have to pass on the weekly communion grape juice, or else I start to feel the need to vomit. Things just don't set well with me. But the hope is that by clearing up these mouth sores, I'll be able to eat more and gain some weight. In the meantime, I'll continue to put numbing Oragel on the worst areas of burning or cracking, and eat because I know I need to....even though the tastes are numbed down.

Thank you for so diligently praying! I'll keep you updated as to the results of my next PET scan on the 9th.

Thursday, September 4

school of life

I wrote this morning about the physical side effects of the current chemo I'm on. I sometimes feel like I have two lives: one as a cancer patient, the other as ME (—mom, wife, homemaker, friend, and the me only God sees). So this Part 2 of today is focused on my life as a mom....not the me with cancer.

We're into our 3rd week of school now. I can hardly believe it. So far, both of the kids are loving school and thriving. I just love new beginnings. A new school year.....fresh with new opportunities. New friends, new ideas, expanding our minds, soaking in the Word, learning some difficult lessons—through studies AND relationships. It all sums up into adrenalin that motivates us to do better and to BE better.

The first day of school. I can't believe I have an 8th grader and a 5th grader. I tear up just thinking about these two blessings that God has allowed me to love and parent. My heart is full.



My heart is still heavy when I hear of relationships troubles and all of the drama that goes on within school walls that seep into the walls of students' hearts. I know that school is 50% about studies and 50% about peers. And that adds up to 100% about growing and learning. I wish all children would focus 100% on school and leave out the drama. But then perhaps that's just my introverted tendencies forcing their way to the front of my being. I know that relationships are extremely important. After all, we can't take anything to heaven with us except relationships—souls.

So it seems that I, as a parent, am forced to deal with it, too. When my kids come home from school, instead of only focusing on what homework needs to be done, I need to probe a bit and find out how they're doing emotionally and how they're handling the relationships that they have. These are the years that their peers could potentially shape their future, or at the very least how they see themselves. How important is it to them to fit in and be noticed? I need to ask my kids questions and get them talking. Life is hard (no one knows this better than me), and I so badly want my kids to live their life for God and not for themselves or their friends or even their parents. Such a difficult lesson to teach when it's easier said than done. I believe that every single trial (no matter how big or small) is an opportunity to practice this lesson of surrendering the problem and the accompanying emotions to God.

Will surrendering to God make the problems go away? Probably not. Will it make my child more popular? Will it make someone nicer? Will it stop the gossips and trouble-makers? Most likely nothing will change around us. But the key goal is not to wish for perfect circumstances and an ideal surrounding, filled with only happy people who think the world of us. The key is to rise above all of the chaos and find shelter and peace and protection in the arms of Jesus Christ.

I really love our school and I'm so glad my kids enjoy school. And this year they are both committed to work hard on their studies and be the best example of Christ they can be. This is all I can hope for as a mom. I want them to learn. And for them to WANT to learn. Open hearts and open minds.

My goal this year as a parent is two-fold. First I have a goal for my kids to become independent in their studies. I need to gradually step behind them and let them make their own mistakes. Hopefully there will be no "Ooops. I forgot to do my homework" or "I only have one night to do this project." I can't forever be telling them to do their homework before they get on social media or play games on their apple devices. I can't keep planning their evenings for them. They need to be responsible with their time and not procrastinate. Learning this the hard way, may be good for them. Second, my goal is to spend more time nurturing their character. Instead of focusing on schoolwork 100% of every evening, I want it to be 50% on schoolwork and 50% on character building and spiritual guidance. Little do my children know they are students in the School of Life—every day preparing them for independence.

concerned

I've been a bit concerned lately. I'll share my concern here as I am certain my faithful prayer warriors will take this to the Lord.

My concern is that I'm losing too much weight. For awhile I had plateau'd around 98–102 pounds. While I feel I'm at my best around 107–110 pounds (for my height and frame), I was content with hovering around 100. But now it seems like no matter what or how much I eat, I keep losing pounds. I've never been this low in my adult years. I stand right now at 87 pounds. My 13-year old daughter and I can easily share clothes. I hate looking at my body because it looks so skeletal. And skin just hangs loose all over the place.

I'm concerned because it's not just a matter of eating more. My stomach has shrunk and I get full after eating only a portion of my meals. Also, the mouth sores are getting worse, so eating is very painful. I'd rather sleep than eat, so that's what I end up doing sometimes. This is not good.

I'll be seeing my oncologist tomorrow. I don't think I've seen him in over 2 months! Every 3 weeks when I go in for blood work and zometa, I've been seeing a nurse instead of my doctor. I can't wait to fill him in on what's been going on. I'll see what he has to say, and hopefully he'll agree with me that I either need to take a lower dose of this chemo I'm on, or we need to take a break from it altogether. I really could use the time to build up my strength, lose the mouth sores (—nothing has worked to heal my burning mouth; I just have to put Oral Gel all over before I can eat), and gain some weight.

My other concern is with my fingertips. It looks like I may lose my left index fingernail. The shape of my nails are changing, but the bigger issue is that the tips of my fingers are cracking and getting numb. I can't do simple things like pull apart two papers that are stuck together (or pull apart an unopened bag of chips), or open a can of soda. Sometimes, even, my phone doesn't recognize my fingertip when I try to touch a link or scroll a page. My fingertips are hardened and wrinkled. I'm sure this will go away once I am off of this chemo.

I'm torn, though, because these treatments are keeping me alive. I sort of don't want to stop this chemo unless it's not working on the cancer. If xeloda (current chemo) has proven to stop the growth of cancer, then that's wonderful! The more months we can keep the cancer from growing and spreading, the more months I have to be alive. I'm sure my oncologist and I will discuss when to schedule my next PET scan. Until I have the answers to whether or not xeloda is working, please pray with me about treatment decisions and the side effects I'm currently enduring.

This is Part 1 of a 2-part blog entry. To come...the end of summer and beginning of a new school year.....

Wednesday, August 20

thirteen


I think I'm obsessed with this age. My daughter just turned 13 and as I try to relate and understand her, I'm somewhat forced to remember what it was like being 13.

I know that everyone's testimony is unique, but mine started at age 13. I don't know if I've really shared this on my blog before, but hopefully my story will mean something to someone out there.

I was NOT a nice child. There was always a thread of darkness that ran through me. I wanted to be good, but I just couldn't. I was always either jealous or angry, it seemed. I'm told that a typical 2nd born child is more strong-willed. She (or he) wants to be noticed. I realized that I got lost by not being the firstborn (and having all the privileges that came with that) and I was never as sweet or precious as the baby. I know that I sought attention whenever and however I could get it—even if it was negative attention. I think, looking back, that I was so strong-willed that I didn't even care if I got caught doing something wrong. In my mind, I would do what I wanted, and then suffer the consequences later, IF I even got caught at all. That "high" of getting away with something kept driving me, I think. I don't know. I went to church all the time (every time the doors were open). And I knew the difference between right and wrong. I knew I was sinning when I'd steal or lie, but I just couldn't seem to stop. It's as if that streak of darkness was too powerful.

When I was 13 a few things happened that changed the course of my life. Let me say first that I firmly believe I was headed down a bad hill. I was raised so sheltered that I became rebellious. I remember crying in my bed as I thought, "If this is what it's like to be a Christian, then I don't want to have anything to do with it." It seemed my life was always filled with "no's." I couldn't wear shorts in public, couldn't go to the movies, couldn't stay over at a friend's house, couldn't go to school dances, couldn't wear make-up, couldn't get my ears pierced, couldn't, couldn't, COULDN'T!

When I was 11 or 12, I remember the look of sadness and disappointment in my mom's eyes. I'm not sure what I had done, but around that time I remember kneeling on the floor with my mom on a mustard yellow chair and listening to her pray for me. She was at her wits end I'm sure. Thank goodness for praying moms. I believe this was the beginning of my heart turning toward God.

But back to thirteen.

Another memorable thing that impacted my spiritual journey was a visit to my cousin's house. I was completely caught off guard watching my two female cousins (who were sisters) get along. They actually respected each other and were pleasant to each other. What?! It shocked me. Could siblings actually get along? I wanted that. I wanted so bad to get along with my sisters and have them like me. I knew that I was the reason we didn't get along like that. I didn't know what to do about it, but I tucked that memory inside my head and heart.

Another eye-opener for me was going to a Youth Conference. The speaker's message was all about Christian music verses main-stream Rock. I was a glued captive audience. I remember being appalled as he played a secular song backwards and it had all sorts of satanic messages. My skin just crawled. It was very unlikely that my mom would let us by something at the bookstore, but she actually let my older sister and I pick out a cassette tape (remember those?). My sister chose Petra and I chose Whiteheart. I couldn't believe that the songs in Christian music were so similar in tune and style to what was popular. I ended up choosing to only listen to Christian music. My favorites (okay, now I'm showing my age) were Amy Grant, Sandi Patti, Michael W. Smith, 4Him, Acapella, and Carmen. I wanted so badly to be like my older sister that I determined it to be cool to be different from my friends and listen to Christian music. It was definitely a turning point for me.

Gradually I came to the point that I knew I was sinful and didn't want to be, but needed Jesus to help change me because I couldn't do it on my own. It was difficult to find a place alone in a family of six. So I went to the basement bathroom, locked the door, grabbed a towel, laid on the floor and bawled. I cried out to God to save me. I cried to Jesus to help me be more like Him. I needed help. It was the first time I came to the realization that I can't be a Christian without help. I can't do it on my own.

I very clearly heard the Lord speak to my heart (the VERY FIRST time)! He said, "I forgive you. Now you must go and ask forgiveness of those you've wronged." I immediately got up and found my mom in the kitchen. I asked her to forgive me for the bad things I've done. I did this one by one to all my family members. They didn't really know what was going on, but I felt cleansed and whole for the first time ever.

There was another point 14 years later that my relationship with God had deepened when He showed me all the areas of my life that I hadn't 100% surrendered to Him. But I'll save that story for another time.

Back to why "thirteen" will forever be a special time in my growth with God.

I got baptized shortly thereafter. And suddenly I found it easier to be nice and a good example for my younger sisters. I wasn't perfect and I knew that I still needed help all the time—especially when I messed up. I remember being sad that it took awhile for my mom to trust me again. But in time, I earned her trust. It started out with little things like NOT dancing at a school dance (—I was just there to take pictures for Student Council). It wasn't until the next day that I found out my mom had asked the principal to keep an eye on me to make sure I didn't dance. Also a couple of years later, I went out with some friends and my mom gave me a $20 bill. I returned about $17.50 to her and I'll never forget her surprise and pleasure at receiving money back. Then when I was a junior in High School, I started dating my future husband. No matter when I got home, my mom would be up reading her book. I would always come in and tell her what Dale and I did and what we talked about in the car, parked in our driveway for 1 to 2 hours. I felt it was important for my mom to know that I wasn't bad anymore. I wanted her to see me in a good light. And now, I can say that mom is more a friend than a mom.

So what does all of this have to do with anything?

Regardless of age, the good news is that we CAN'T (and aren't SUPPOSED TO) do it [be good] without help from God's grace, Jesus our Savior and the Holy Spirit our Helper.

I have such a passionate burden for teens and pre-teens. This is the perfect time to give your all to God. Okay, you know you're not perfect. So instead of beating yourself up when you mess up, talk openly with the ONE who can make the pain go away AND change your heart while He's at it. That darkness is one strong Beast. I know. But God is SOOO much stronger than the enemy. Surrender to God. It may sound scary and impossible, but what have you got to lose? Instead of living life confused and depressed, you'll have freedom and all the good gifts that God has waiting for you. Right now, He has a storehouse with your name on it. He's just waiting to bless you for your obedience and sacrifice.

Even saying the name of Jesus, causes the enemy to tremble. Try going further and verbally cast out those demons in Jesus' name that are feeding you with lies—like You're not good enough, You messed up again, No one really loves you, No one can understand what it's like to be you, You're not pretty enough, You're not very smart, Because you don't have money you'll never fit in, and the list is endless. Whatever your particular struggle is, it's not worth a single moment of worry or distress. Pray. Give 'whatever' and everything to God. Let Him deal with it.

Sometimes it can feel overwhelming to be a Christian. But please don't think you have to go at it alone. Although there are many books out there to help you be a better Christian, it's more simple than that. We make it so hard. We just need to have a relationship with God. He'll tell us what to do and how to live. And even better is the fact that God gave us Jesus Christ and the Holy Spirit to guide us and help us.

Just surrender. Surrender it all.

If you don't know how, then spend some time just talking to God. He'll bring to your mind what you need to surrender. Also, get to know your Heavenly Father. He's so much more than a Creator and All-Powerful Supreme Being. He's gentle. And loving. Forgiving, caring, compassionate, merciful, long-suffering/patient, Holy and good. God isn't some distant Being that is waiting to pour down His wrath on the sinner. He's quite the opposite, actually. He loves YOU so much that He wants You to get to know Him. He wants a close relationship with you.

It's really quite free-ing. Living without a care in the world (—because Jesus has already carried our burdens to the Cross) is so awesome. The answer to a free life in Christ is just 2 simple things: 1) Surrender everything to God and 2) Constantly seek God. By constantly seeking our Lord, your faith will grow and it'll be easier to surrender to God and be obedient to Him. It's a beautiful cycle.

Realize that even after you surrender you life to God, we're still human and will fail at times. After all, look at how many times the Israelites strayed. Yet God has mercy and will forgive a contrite heart.

So, thirteen-year-olds, you have a choice to make. You're old enough now to understand. Think on these questions. Search your heart. Ask God to show you any area that you have yet to surrender. Then live the full, free life God has in store for you!

Am I living for myself or am I living for God?
Am I trying to please man (friends, parents, teachers) or is my goal to please God?
Have I surrendered my whole life (possessions, friends, family, money, goals, thoughts, health, AND emotions) to God?

It's the only way to be able to say, "Lord, my life is in your hands now." It's the only way a parent can easily forgive the shooter of her child. It's the only way a person can deal with severe childhood abuse. It's the only way a prisoner can be truly free. It's the only reason why I can cope with terminal cancer. "My old self has been crucified with Christ. It is no longer I who live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God who loved me and gave himself for me."—Galatians 2:20

Boy, I SO hope at least one person out there is moved in his/her spirit. Now can be a turning point for anyone hurting. If you feel like there's an emptiness in your life or a dark thread streaming through your veins, don't wait a moment longer. Find freedom in Jesus Christ. You are more than worth it. Jesus saw YOU (your face, your name, even your sins) and said, "You are worthy enough to die for."