It’s hard to believe it’s been one month already. I know many of you who cared for Julie were unable to attend her memorial service. A member of our congregation, with a servant’s heart, worked very hard to put together this video from her service. Thank you Mike. I hope that you find this celebration of her life uplifting and may it bring comfort knowing she lived life with noble character, a smile on her face, and a heart full of joy.
Follow the link to purchase your “it is well” memorial t-shirt.
http://fight4julie.bigcartel.com
Once you follow the link, click on the picture of the shirt to select size and shipping options.
A memorial service for Julie will be held on:
Sunday, July 19th, 2015 @ 3:30pm
The Fellowship Church – Round Rock
3379 Gattis School Rd, Round Rock, TX 78664
Attire: Casual
My best friend, wife, and an amazing mother has left behind the hurt of this world. She now abides in the comfort of her first and truest love. Oh sweet soul, my Jugi, how I will miss your smile.
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.
Psalm 9
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.
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Alyssa and I were blessed to enjoy a friend’s beach house in Gulf Shores, Alabama. We had another friend buy our airline tickets and totally made this trip awesome. I can’t possibly repay the friends for their generosity. We enjoyed … Continue reading