Follow the link to purchase your “it is well” memorial t-shirt.
Once you follow the link, click on the picture of the shirt to select size and shipping options.
Follow the link to purchase your “it is well” memorial t-shirt.
Once you follow the link, click on the picture of the shirt to select size and shipping options.
This is my view for more of my day that I really want. Because my liver is being overcome with cancer, it is not functioning in the proper way. And I don’t really know what that means other than it produces fluid. And gravity brings the fluid to my feet. Now, if I was the type who laid in bed all day, I guess I would be okay. But…I’m not. When I feel good, I want to be up and can still find things for me to do. But after a few hours, my feet are beckoning me to be propped up. So I pile my pillows and sit in my beautifully designed new bedroom. Did you hear that story?
I sent an email out several months ago to my friends in town, that one thing I have always wanted was a beautiful master bedroom. It was always the last room to be done in every house I lived in and honestly never really got “done”. And if I had the possibility of spending any amount of time in the bedroom, I wanted it to be relaxing. Of course, my friends got to work. Donations came from friends, life groups, our womens’ bible study. Then a day of painting, A day of shopping. Another day of painting. Bedding, pillows, lamps…. it is perfect. I am certainly surrounded by love.
I hope that many of you follow Fight4Julie on Facebook or Instragram (juliedwhaley) because I do post a little more often there. But I know that it is certainly time for an update here too. The simple update remains to be: When I feel good, I do whatever I want. We went to South Padre for a weekend. I had the luxury of simply sitting in a chair, but that is what the beach is for.
When we feel like dessert, we go out for a treat.
And when my brother comes in town and wants his head shaved… that’s what I do.
But I have to be honest and say that for several good days, there is a bad one. I am still doing chemo, but I haven’t really been able to connect that to the bad days. The kind of day where I take 3 naps. Where breathing is hard enough that I wonder if I could actually suffocate or is it just a feeling. A moment where I take the maximum dosage of morphine. A night that brings no sleep because of discomfort. And the following morning where my husband just looks at me and I know what he is thinking though neither of us want to say it. But, after each of those hard days, has comes a better one. I wake up the next day to more energy, less pain and usually the ability to get out of the house which I didn’t the day before. It is welcomed, but it is confusing. We don’t know if chemo is working, but we don’t want to alter anything either. We can see that the liver is still struggling and breathing has become very difficult, but there are still good days. So, I guess we are just called to live. And that may be a motorized wheelchair at Wal-mart, which I learned the hard way today, or it may be a handicap car tag so I don’t have to walk across the parking lot. But those things mean I am still living.
Thank you for your messages, your prayers, your cards of love, the donations that are still coming in, the texts, the love that I know is thrown our way everyday. We are still doing our best.
I woke this morning and just needed my time in my closet. That is my quiet place. Maybe I should spend some time making it more comfortable than just my back against the hard wall staring at the pile of dirty clothes with, but maybe it just lets me concentrate on Him. This sums up perfect the peaceful place I am right now.
I will give thanks to you, Lord, with all my heart;
I will tell of all your wonderful deeds.
I will be glad and rejoice in you;
I will sing the praises of your name, O Most High.
The cancer is rapidly growing. Life looks much shorter than we had ever prepared, but my Peace is greater. I want that out there for you, because I want you to know. I want all of you to be thankful for the peace that surrounds me and I want it to begin to penetrate you.
I arrived back from my trip with Audrey and Ethan knew immediately that we had to call the doctor. My trips, the things that were so important, literally came in under the wire. The next morning, we had a procedure for a PleurX drain that will stay in permanently and allow me to drain the fluid from my lungs at home. I was down to a tangerine size area in my lung that was letting me breath. My oxygen stat was below 90 and I was just struggling, but didn’t really realize how bad it was. We went to the hospital for day surgery (hahaha), but because of an infection, I was admitted for 5 days. Ethan will admit that he thought I may not come home, ever. The lungs and breathing began to do better, but my abdomen and pain level were unbearable. A CT was done and the result was that the cancer on my liver is growing rapidly. Two weeks ago, I felt fine. The liver seemed to functioning and it was the lungs that looked more like the main thing to keep our eyes on. Two weeks forward, my liver is enlarged stretching way further across my abdomen than normal. The scare last week was that if it has grown that fast in a few weeks, be prepared for what the next few weeks could look like. We were finally able to get the pain under control and for about a week, I have felt more my normal self. I am on oxygen around the clock which keeps my O2 stats up and my heart rate down. There is a large pump in the corner of the house with a long, annoying tube that follows me everywhere I go. Actually, if it followed me, that would be nice. I have to coil it up and bring it along.
But we have called Hospice. It was more of admin move, get established, meet the nurse. But it is admitting that this is terminal. Admitting that the conversation changes. With friends, with family, with kids, with each other. This is not “if”. This is “when”. Honestly, the “when” looked different last week than it does to me today. We are preparing for reality. We are talking through things that you never, ever want to even let your mind wander to, much less discuss enough to make real decisions. But everyday that I am up. Everyday that I am driving. Everyday that I am making a lunch, visiting with friends, sweeping the floor (ok, I can’t really do that one anymore), brushing hair, reading books and rubbing feet at night, I thank God. I praise Him for time. I try to consciously remind the girls that we are to recognize this day. For this energy. For this time. And when the time comes that it looks different, He will still be my presence, my peace and I will still stand and praise Him. My heart’s desire is that you will too. Through the grief. Through the disbelief. Through the unthinkable. That you will be filled with His love, know that His love is good and He will be enough.
I took my last scheduled “girl” trip with Audrey last week. We had already post-poned this trip to the Hyatt Lost Pines because of all the rain, so we were going rain or shine. The weather took me up on that because the night we arrived we ended up in the basement of the hotel with all the guests for a tornado warning. The hotel did a great job with snacks and pillows and water, but it was a tight space and not where I would have chosen to be. After about an hour, all was safe and we came out.
Audrey and I enjoyed our time together for sure. We had breakfast and dinners together, we snuggled to movies at night. We played games and colored. But I know she noticed her trip was not as good. I had built up all the activiites we could do: ziplining, horseback riding, the lazy river and slides. Because of the weather none of those activites were going on. They did open the secondary pool the second day while the big pool was being shocked. Audrey swam for 30 min or so until a little girl threw up in the water… and well, now that pool was closed. We decided to get off the property and ate dinner and went bowling. We came back to a family movie night of the Jungle Book where we were the only 2 watching… haha. I told her that the next morning was supposed to be nice, we will get up and swim. It was a bit cloudy so we went for a bike ride first. Headed up to our room, swimsuits and towels in hand… “uh, Mrs.Whaley? I can see that you are headed to the pool, and I wanted to let you know that they heard thunder and it is closed.” SERIOUS??
Well, like your average 6 year old, she was bribed with a trip to Target to pick something out on the way home. I had many people who chipped in for this trip and I want to say thank you for making it possible. It wasn’t what we intended, but I know the time with Audrey was well spent.
I was tired on this trip. Slower getting around. Even took a nap one day while she watched Disney. I am so thankful the timing of the trip happened when it did, because when we returned Wednesday, I went downhill fast. Ethan was already working from home, I crawled in bed and didn’t leave. Thursday morning, he called the doctor and we ended up with a procedure and a 4 day stay in the hospital. I am look to go home tomorrow with full time oxygen, less fluid on my lungs and feeling much better. But 1 more day and I would have missed my window with my baby girl. Thank you God for your perfect timing, tornado or not.
I am approaching 4 weeks on this nutrition change. I have hit ups and downs all along the way. Thankfully, I have many at my disposal working on meal plans, recipes, etc. I have felt everything from excitement as I cook and try new things all the way to anger and eating maybe too many of my gluten-free, low carb brownies. I think I am an emotional eater. When I would get down or angry, a handful of frozen chocolate chips was not uncommon to pop in my mouth. Now I am in this place where that comfort, that coping mechanism has been taken away. Excuses can go on and on… but bottom line is I don’t like this. And I am sure you all know that, but I still need to just say it.
And as time goes on things change and progress. I have not been blessed so far with stabilization or regression. I fully expected to see a change by now. Maybe the cancer would not be gone or even smaller, but I really thought at least stable. But in the last 2 weeks, I have been in more pain, more tired, and had a harder time breathing than I have in the past. I have said many times in the pasr that I feel great, I feel normal… it is so weird that there is cancer all over, because I can’t tell. Well, I am finally at the point that I can no longer say that. Off of all the treatments, the chemo, I feel the cancer. The ache is my bones, particularly my legs, is unbearable at times. It interrupts my sleep, my play with the kids, my energy. My lung is still striving to get air and that makes everything from taking out the trash to reading books at bedtime difficult. The hard truth that I don’t even want to type is that I feel like I am dying. I feel like this is what the end feels like. It’s not a chemo dose that will run its course. Its not one of the many shots that makes me feel bad for a day or two. This is cancer. This is what it does. It invades every, EVERY, aspect of my life.
This week, I will have a radiation planning appointment. I will begin pin-point radiation on my hips and femurs. The worry is that for those main weight-bearing areas, if the cancer grows too widespread and weakens the bone, I am at risk for fracture or breaks. And I recall my doctor saying, “If you break a hip, you will never make it out of the hospital.” Honest, right? So to help ease some of the pain, to attack the cancer in those spots, and to give the bone a chance to regenerate, I will do 10 days of a low dose radiation here in Austin. I am hoping that it gives me some real relief.
But what after that? I don’t know. Do I go back to chemo? Does chemo potentially give me more time? I don’t know. These decisions would be so much easier if we just knew the answer. For now, we covet your prayers. Prayers for wisdom. Prayers for pain relief. Prayers to be able to enjoy what we have today. Prayers that God will still heal. The great thing about hope is that nothing can ever take it away. I can have hope up until my very last breath. A belief that my God can do anything. The struggle of this is knowing He can and not understanding why He doesn’t. Accepting this life and this journey that has been laid out for me since the beginning of time. Faithfully accepting the grace that God gives me to make it through the next curve and letting that be enough.
My heart is heavy. My heart aches for healing. But my soul is covered in the love of my Savior. I have never been more thankful for the gift of salvation than now, looking into the eyes of death. Believing that all I had to do was say yes and Jesus did the rest. That when that day comes, despite the grieving there will be rejoicing. Oh, how I don’t understand it, but my soul pushes me on to believe it every day.
Megan and I were off to her place of choice, Great Wolf Lodge. We have been as a family a few times so she knew exactly where she wanted to go. She certainly surprised me with her independence and was off on her own every time I turned around. I had to keep reminding her this was a mom and me trip. She made a buddy the first night we were there. We met up a few times with them and enjoyed lunch the last day together. That is when God really opened the door to this radical diet change. Her mom had breast cancer years ago and her father got me on the right track. I certainly consider our meeting a gift from God.
Megan and I swam and rode rides and snuggled with movies at night. We went to the theater and an aquarium one day as well. She finally completed the Magi Quest game that GWL has that involves us going up and down stairs searching for clues and ultimately fighting the dragon. It was totally up her alley. She was disappointed to leave, but we enjoyed a great trip together. This trip was also blessed by a few friends who donated money to our account at the GWL. I didn’t even know you could do that, but they figured out how. Great people around me for sure.
When Moses asked God who he was to say sent him to Pharaoh, God responded tell him it is I AM. I always thought that just meant he is the I AM – that’s enough, its Me.. God. But it means that He will be whatever Moses needs him to be. If you need miraculous signs – I AM. You need me to interrupt nature and part the sea – I AM. You need food and water in the desert – I AM. I AM everything you will need to accomplish this task.
God did say he would bring them into the land, but the Israelites had to fight for it. They were not expected to do it on their own strength, but with God’s strength. He says,”I will be an enemy to your enemies and will oppose those who oppose you.” God would help them by bringing down the walls of Jericho, he would give them strategies to defeat the enemy, he would empower them, but they had to obey and fight.
This encourages me to trust that God is still my I AM. I AM your protector. I AM your toxic cleanser. I AM your medicine. I AM your strength at the end of the day. I AM your strategy giver. I AM your Father. I can be everything you need to accomplish this task.
In the last 2 weeks, I have made the decision to stop chemo (for now). I have met with too many people and have too many opinions to sort through. We have decided that a radical diet change is the best way to get my immune system jump started and let my own God-created body try to fight this cancer. The cancer is smart, getting smarter. It can dismiss drugs and leave itself completely unaltered. But my own body… it was designed to fight these abnormalities. My prayer is that God will allow me to stay well enough, long enough to fight this internally.
Maybe for some, I look like I am fighting. I am taking this in stride and giving it my all. But it is hard. I love Mighty Fine. I love Chick-fil-A. I love lunches with my husband and quick easy dinners when I’m tired. But now my life is planned. I have to always have on hand what I can eat and be prepared to cook a dinner worthy of this diet. That is hard. And honestly, I am angry at what I am now eating. I’m angry that the pleasures of food have been taken away. (I don’t actually crave roasted broccoli for a snack) I’m angry it takes so much prep and money to eat this way. I’m angry that there is not just one way to do this and everyone has a suggestion – only clouding the water for us. I am trying to do this on my own and not letting God be my I AM. You need me to take away your cravings? I AM. You need me to help with strategies? I AM. You need me to interrupt the way your body is working to fight the cancer. I AM. But in the same breath as I am letting God be everything I need, like the Israelites, I still have to fight. I have to go to the store. I have to cut the veggies. I have to make a plan for dinner. I have to look at this as an opportunity to fight this cancer. It is going to take work and dedication and perseverance. The PET scans show cancer in all my bones, and surrounding the right lung. There are spots on the liver and it appears that things have progressed in the last few months. It is hard to measure bc it is so wide spread. I just glow all over in the scan. I will stick to a detox and a harsh diet for the next 30 days and we will rescan. My prayer is that there will be signs that this is working. My prayer is that God will reward this hard work, this fight, with a new HOPE, and that there will always be grace to take the next step.
Thank you all for your words, you donations, your cards. I have taken 2 trips with my girls and have just Audrey’s left. I will try to get the pics up here for you to see. The love and support is indescribable. It is only from God. I am blessed to receive it.
Quicker than I would like. Quicker than I really imagined.
I have had some redness on my side for a few months. It is in the area where I have had major surgery, a 12 inch scar, 4 drains and then the latest thoracentesis. It was hard to know what the redness was from. When the doc had looked at it in the past, he mentioned it could be cancer or an infection, so we just kept an eye on it. Friday we did a biopsy. We waited through the weekend, waited Monday, Tuesday, Wednesday and finally Thursday had confirmation that the cancer is in the skin. While there is cancer in plenty of other places, it is still very frustrating to have it still growing, moving and showing up in new places. It is common for cancer cells to show in surgical sites. The cancer cells get new means of transportation and blood supplies change or even travel through the surgical site like tubes. However it got there, I have individual cancer cells in the area. Not a tumor, but just cells — which is good. It we get to a tumor of cells, we would radiate that area.
So, here is where things change. Because cancer is still growing/spreading despite being on Xeloda, it kinda means that Xeloda isn’t working. Ugh! I had read several good testimonies about that drug and since it had “mild” side effects and the convenience of a pill, I really wanted it to be the one we stuck with. But after 2 cycles, we are already moving on. The next drug is Eribulin. It will be given intravenously, so back to typical chemo days. Side effects really vary so I am unsure what to expect. Fatigue, low blood counts, possible hair loss…. it goes on. The really discouraging news is that the more drugs I take unsuccessfully, the less chance the next drug will work.
It is just a dance. The diagnosis of stage IV, the prognosis of my time left, but I feel good and life keeps going. Then randomly through the day or week, I am reminded of what I am really staring at. A disease that is not understood by anyone. A disease that will keep me on toxic drugs for the rest of my life. I am in distress of what I can do on my own to help my body. Diet change? Med change? Doctor change? Eat this, don’t eat this? This vitamin. This oil. It is so overwhelming for a girl who likes her chocolate and Mighty Fine. I am in prayer for some insight or direction in these decisions.
Despite reality, I am so blessed by friends near and far. Friends who bring me food without notice. Friends who will sit and cry with me and sit and laugh with me. I have thousands of people who follow my posts and hopefully are drawn toward God through my struggles. Friends who pray because they can’t be by my side. Family who loves me. Who desperately prays for my healing. A church filled with love and compassion. I could go on…
Through this last week and my questions of why and what is the point in God’s plan… a new perspective was brought to my attention. Instead of the mindset that God is involved in this cancer journey, that he is making the decisions yes or no, that he is allowing all this to happen for some “reason”… what if He is just present? What if cancer is cancer because if this sinful world? What if my body is dying because that is what it does? Maybe I am just fighting against this world and not against God’s “no’s”. I like the visual of God walking beside me. Fully knowing what is going on and what is to happen, but simply being present. Offering His grace, His peace, His never changing love as I suffer and struggle.
Psalm 46: God is our refuge and strength an ever-present help in trouble…Though the earth give way, mountains quake, God is within her…God will help her at break of day…THE LORD ALMIGHTY IS WITH US.
Psalm 121: I lift my eyes to the hills…My help comes from the Lord…he who watches over you will not slumber…the Lord will watch over your coming and going both now and forevermore.
For now it does my soul good to just see God as my strength, my protector, always present. He may not prevent all the bad things from happening though He is fully capable. He never wanted them to happen. He never created the earth to be this way. Its sin. Let’s hate sin. And lets rejoice in the freedom we have from this sin in Jesus Christ. Let’s rejoice that even though our bodies wither and die, we are promised eternal glory if we only BELIEVE. I don’t want you to only hurt for us, and continue to follow us because of the sadness and drama of our story. If my story can do anything, it can bring any of you to the Savior.
“If you declare with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved.”
Done and done. That’s it. That is all you have to do. For God has done the rest.
I feel like I should apologize for my silence, but I won’t. I know there are so many, so many, of you out there who follow and who sincerely want to know how “we” are doing. And for that, I am sorry that I haven’t at least given you the update that I am well. I could tell by the reactions when I went to church 2 weeks ago that some of you were just surprised I was dressed. But when things are going well, I feel good, and cancer is not knocking on my bedroom door, I want to just live. I want to carry on in some way that isn’t wrapped around sharing news or thinking of news or finding out news. You can usually take my silence as good news.
I finished my first cycle of Xeloda and had 1 week off. My side effects were hardly noticeable during the 2 weeks, but as the off week approached, my body must have been saturated. My hands and feet began to hurt. Like a sensitive feeling. While I didn’t see any mouth sores, my mouth was sore. Certain foods burned, most food had no taste and I just felt like I was holding my lips funny all week. But today as I start the next cycle, my body is back to normal. Only to repeat the process in 2 weeks I assume. We haven’t had any scans or marker testing yet, but I am anxious for that in the next few weeks.
My breathing is much better. While in the hospital, I was explaining the difficulty to my sister in law, and asked her how many seconds she could inhale. She said she could inhale air into her lungs for about 10 seconds. At the time, mine was only 2 seconds. There was pain and then my lungs just stopped, I couldn’t take in any more air. Try it yourself. I will always have restricted breathing, but today I can get close to 6 seconds. There are still pockets of fluid on the side we did the procedure on, it worked in some ways, but also trapped in fluid. We see fluid on the other lung as well, but it is not causing any problems right now so we will not address it.
I have been active with the kids, doing my daily tasks and trying to enjoy my moments. However, cancer is still present. Reality still meets me daily. Because in the middle of laundry, I am filling out a book about myself to leave to my kids. While I wait in the pickup line, I am signing birthday cards that I want to leave for my girls to open years and years from now. While planning for dinner, I am recording the book of John for them to listen to their mom’s voice and God’s word at the same time. You see, life goes on, for right now it really does. But how far it goes on is never far from my thoughts. What can I do for them or what should I leave for them is always heavy on my heart. The balance of staying full of hope for healing and preparing for the possible is overwhelming.