Message from Janelle (4/21)

To our Friends and Family,

            Many of you have heard the news by now about my cancer diagnosis. For those of you who haven’t, I warn you that this e-mail is probably the longest you have ever received and full of details that will shock you, but also hopefully inspire you.  All of these events have been unfolding since February, but have gone at lightning speed since the diagnosis on April 5^th. I will try to give you the details here because I know that many of you are shocked and have lots of questions.

            For those of you who don’t know, we moved to Charlotte, NC in June ’05  and feel Divinely placed in the neighborhood we are in.  I had not been feeling my usual spunk since about mid-February. The best way to describe it is I felt like I was walking in slow motion through fog. My usual daily routine felt overwhelming. I began to not be concerned with clutter, which is totally not like me, and just kept thinking I would get to it when I felt better.  My sense of organization and motivation were slowly declining. Many of you know that I am late for everything. Typically this is because I am trying to unload the dishwasher, pick up toys and do 10 last things before walking out the door. Well, during the last couple of months I have been late repeatedly for Jakob’s appointments and preschool, sometimes up to 40 minutes.  Many of you know that I love clocks. Well, I started setting them ahead to “trick myself” into being on time. The problem was, every clock had a different time. Luke began asking, “Mommy, which clock is the right clock?” I honestly didn’t know and the sad thing is it just really didn’t bother me. Willem had taken two trips in February and I thought that I was just worn out from taking care of the kids, moving twice in one year and caring for all of Jakob’s therapies. He, by the way, is doing well and taking steps with a walker. Something many of you prayed long and hard about with us. Praise God!!

            Though walking with a walker outside and in therapy, there is still a need to carry him a lot.  I thought that maybe this was wearing me out. He is 35 pounds now. I decided to take a body sculpting class to build my strength. Also, along with the other symptoms, I had begun having headaches and some nausea in the morning. I almost never get headaches. I took a pregnancy test, which was negative. Honestly, it really felt like pregnancy. I was just not “on top of my game” but thinking it would get better soon. I changed my diet and started taking vitamins. I started to feel like I was becoming a hypochondriac. Then one day when touring a pre-school for Jakob I had a headache and for the first time it was followed by vomiting that happened extremely quickly. I immediately made a Dr. appt. My blood work came back fine. They prescribed an anti-inflammatory to break the cycle of “tension headaches” because of the stress I am under, being new to the area and caring for Jakob and his brothers.

            Anyway, the headaches and vomiting continued into March, but only about once a week. In between, I was taking the kids to school, choosing paint colors for my house, carrying on with life, but wondering what was happening to me. We have a family history of chronic fatigue and also depression. In March, I had to really start thinking about when the last time was that I felt like myself.  I wondered about a brain tumor, in fact even asked the doctor, and kept testing myself by walking a straight line, touching my finger to my nose, etc. All of you fellow hypochondriac friends of mine know that I can jump to the worst conclusions.  But then I thought Excedrin wouldn’t work so well if I had a brain tumor. It wasn’t even Excedrin Migraine and it usually made me feel better in about ten minutes.

            At the end of March, we went on a trip to the mountains. It was there that I really started feeling sick every day and vomiting a lot. I think the altitude and winding roads really exacerbated my symptoms.  I had to lay in the back of the van while everyone else was hiking. I just wanted to be in nature, even if it was only in the van. I took and Excedrin and felt better in about ten minutes.  My sister, who hadn’t seen me since November, not only noticed the illness but that I just wasn’t my usual spunky self. My steps were slower, my energy was lower, I didn’t respond to the boys when they spoke to me and was basically a little zoned out and I wasn’t multi-tasking.  It was a marked difference for her. For Willem and I, my symptoms were more insidious. He teasingly said he was an investment banker by day because many weekends and evenings he was spending trying to catch up with what I couldn’t do. We just thought that I needed more rest and help and that things would get better in the fall when all the boys would be in school. We have had someone helping with the boys one day a week and we asked her to come one additional half day. My laundry had gotten completely out of control. We decided to have someone come in 2x per month to help. I’m surprised the poor woman didn’t run away in tears the first day. She spent nine straight hours doing laundry and still did not get through it. Have you seen the commercial where the woman is so thrilled that her potatoes are so simple to make and she asks the announcer if she can get caught up on her laundry? That was me. I kept saying that I was drowning in laundry.

            As soon as we returned from the mountains I made a Dr. appointment again. However, I was too sick to go. I just got into bed and called our babysitter to come early. By the end of the day, at my family’s urging I went to the E.R. What a nightmare! I was triaged to the bottom of the list because my symptoms were not very serious. Six and ½ hours later at 1:30AM I saw the Dr. She wanted to know if I felt like I could hold down a pill for nausea. I said no that I wanted I.V. fluids and a CAT scan. She did all the physical/neurological tests and I did well. Then I received the CAT scan results. The Dr. told me that there was a large, what looked to be malignant, tumor on my right frontal lobe. I had brain cancer! Complete shock. All I can say is that right there in that room I felt a peace come over me. I felt held (have you heard the song ‘Held’ by Natalie Grant?) and carried by God in the moment and for the unbelievably scary days that were to come. They followed up with an MRI and what I saw on the scans looked very bad and big. Still, I was experiencing an unspeakable peace. I attribute that to God walking us through the very scary time before the birth of Jakob when so much was unknown. I was so afraid in that dark valley. Now, however, he is such a gift and brings us such unbelievable joy!! I believe fully that He will bring good things from this dark journey as well. Our faith is strong.

            We saw a surgeon on the next day, which was Wed. April 5^th. Without hesitation, he scheduled the surgery for Friday afternoon, April 7^th. It was clear that he thought we were dealing with one of the most severe types of brain cancer and he wanted to move quickly. He did however tell us that he had a friend who had the same type of tumor when he was 33 and now he is 47. That was good news. Was this all really happening? This man was going to be operating on my brain in less than 48 hours. I was going to be his second tumor removal of the day. I said that I hoped he would not be too tired. He said he would just be getting warmed up. I trusted him. God kept me at amazing peace. I knew y’all were praying and I felt it.

            We then came home and got the word out to some people in Naperville and our church and our neighborhood. It’s hard to tell the story over and over again so we limited it.  The support was amazing. I have never felt so loved in all my life. We heard of the church being open for prayer, growth groups spending focused time in prayer, high school English classes and Taylor alumni praying. Kirk Luttrell flew down to be with Willem without even allowing us to say no (which he would probably have said because he didn’t want to inconvenience anybody) and was an amazing support to him in prayer and love while the surgery was taking place. He also wanted to be sure that our church here would be taking care of us as NPC would have if we were in Naperville.  However, the prayer support reached across the miles and gave us great strength.  I continued to feel peaceful, like never before. Our neighbors and church family here started organizing meals, rides to school, childcare and everything we needed, so that we could just focus on my health.

            The day of the surgery I still felt God’s peace and presence and all of your prayers sustained me. Even when they were wrapping electrodes around my fingers and toes to be able to check my movement during surgery. God sent a nurse who prayed with me and a Christian anesthesiologist  to encourage me, just as we had seen many Christians who were involved in the delivery of Jakob.

            Well, God answered prayers for a successful surgery, an amazing brain surgeon and no brain damage. He told Willem that the surgery went well and that my vital signs were very stable the entire time. Apparently, the tumor was clear cut in one section and a little more embedded in another. It became unclear what was brain tissue and what was tumor. However, he said that if I was 60 he would not have been as aggressive. He was preparing Willem that I might have some left-sided weakness/paralysis. It’s hard to hear all the risks of brain surgery and I believe there is such a thing as too much information. I learned that with Jakob and spent too much time worrying and being sad. He is such a joy.

            Prior to surgery, I told Willem I wanted to know everything the Dr. said when it was over and not to hold anything back from me. All I needed to do was look at his face after surgery and see that he was more relaxed and happy than he had been all week. When I came out of anesthesia, I immediately started moving everything and it was all working. I was still intibated (sp?) so I couldn’t talk. I actually felt more clear than I had in months and the fog seemed to be lifted. Praise God!!  I immediately wanted to write. I wasn’t swearing like a sailor as I had feared either. I had all kinds of questions about the surgery. My sisters and Dad were here too. One sister spent the night in the waiting room with her husband, even though they could only come in 1 time for 15 minutes. Get this, my nurse’s name was Butch, isn’t that comforting?

            The next afternoon I was moved to a regular room and walking. The next afternoon, people!! I felt like a walking miracle and was praising God for another day. The day after that I had lunch with my sister outside in the sun. Honestly, the recovery from this was progressing more easily than a c-section. My sisters were wonderful about spending the night with me and caring for my every toe movement. I have always loved them, but this has brought a whole new bond to our relationships. On Monday, I came home, but only after trying to talk Willem into wheeling me down to a cool decorating store just down the road from the hospital. Can you believe he refused? Many of you know that he has given me a special piece of jewelry after each child was born. I’ve been trying to figure out what I get after delivering a brain tumor. I’m thinking granite countertops!!! Some things don’t even change with brain surgery. The night before surgery I woke up thinking, what if my entire sense of decorating is gone? What if I wake up loving neon green, purple and contemporary design? What if I can’t coordinate fabrics? Never fear. I still love French country design and red!

            Honestly, I am feeling better than I have in months and am back to “only” being five to ten minutes late again. It is so good to be back again and not have to worry about when, where and why I’m getting sick.  Willem keeps saying, I know you’re back, but slow down. I am also on steroids and am totally aware of the clutter that has built up in the house and am ready to plow through it. My clocks are all on the right time again and I have been cleared to drive.  I even spoke Dutch to Willem’s Mother yesterday. Isn’t the brain amazing? I always told Willem that I would be an early Alzheimer patient but now I feel sharper than ever.

            I felt good enough to go to church on Easter and it was an unbelievable service. In fact, the biggest struggle of the day was getting the boys into their Easter sweaters and standing still long enough for picture. Normalcy is good and I hope that everyone who reads this can appreciate the normal, everyday mundaneness of their lives. We would love to have that back again. I had arranged with the pastor to say a few words to the congregation who had been so supportive and prayerful, most not even knowing who we were. There were gasps and applause when the pastor said that I was doing so well I wanted to personally share my story. I just had to praise God for a successful surgery and thank them for all of their prayers and support. I also said that church picnics and Bible study groups were great ways to connect with the church, but brain tumors were especially efficient. We have been having technical difficulties setting up a web-site/message board, but I hope to post our Easter pictures soon.

            Anyway, a new battle is just beginning and the news is mixed. The bad news is that brain cancers are typically aggressive and mine was at stage 4. Typically the first year is when tumors grow back. They think the tumor may have been there for years, but possibly only started growing rapidly during the past couple of months. The good news is that I did not present with symptoms like seizures, as a large majority of people do, or neurological deficits. More good news is that, while still an aggressive tumor, mine (an anaplastic oligodendroglioma) is not the worst type as they feared before surgery. We heard this week that it is the type of tumor which tends to responds better to chemo and radiation. Also, my age is a benefit and research (which I am trying to avoid because I did too much of it with Jakob) seems to indicate that age is a large indicator of more positive outcomes.  The radiologist considers the surgery to be an almost complete excision of the tumor. Now we just have to pray that we can stop what is left from growing rapidly.  Our doctors have been wonderful and we are pleased with the medical care we are receiving. God has brought many Christian caregivers on this journey along with us.

            I will begin chemo and radiation hopefully some time next week. They thought they might start the week after but we said we are ready to fight and want to start as soon as possible. I will start with six weeks of radiation, which is a daily appointment at the cancer center and lasts about 20 minutes.   At the same time, my chemo will be a pill taken at night about an hour after a nausea pill. So, I am likely to be really tired and nauseous. After a six week period we will take a 1 month break and then continue with chemo.

            So, this is where we are at and we can’t thank you enough for lifting us in your prayers, sending cards, CDs, flowers and encouraging words and scriptures. We feel God carrying us through this storm. Most days we are pretty positive, but sometimes it feels sad and discouraging. I typically turn to e-mails, cards and music at those times. I have insomnia from the steroids and usually have bouts of e-mailing in the middle of the night. I honestly feel that it is like therapy for me.

            Thank you for loving us and helping us through this valley. We would appreciate your continued prayers for strength, for this tumor to be eradicated by chemo and radiation, for me to still feel good enough to interact and read and play with my precious boys, for Willem’s strength as he will now be partly working from home and managing a lot more of the household responsibilities. We are, however, lining up a lot of help. I just don’t want to have a “sickly” climate in the house and want to keep things as normal as possible and do as much as I can. 

            The boys seem to be doing really well and are enjoying all of the visitors and Daddy being home. I will go to their rooms at night and, social worker that I am, will check on their emotional health and so far I am pleased. We try to prepare them as much as possible for how I will feel, the Dr.’s appointment, etc. without making it all too scary and allow plenty of time for them to talk about how they feel. So far, with the help of my sisters we have been able to keep up with Jakob’s therapies. This has become such an important part of my life. I don’t want to give it up. However, he will be starting preschool in May three mornings a week and they will work with him daily with therapies and his walker. It’s going to be a little quiet around here.

            I want to leave you with some scripture that encouraged me during my journey with Jakob and again during this trial. How hopeless we would be without God at such a time.

            “…fear not, for I have redeemed you; I have summoned you by name; you are Mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior…”  Isaiah 43:1-3

                                                            Treasuring Every God-Given Day,

                                                                                                Janelle