I'm Finally Updating

Hello again! It's been hard for me to update lately. I think it's because I am having a hard time emotionally. I'm not looking for a pity party. I'm just trying to be straight up honest. I've battled depression in the past. Throw that in with the mix of two chronically ill children, one insomniac, a husband with an autoimmune disease, and me battling cancer, and I think it'd be too much for anyone at times. I've gone though a plethora of emotions lately. There are times when I'm unstoppable and think that we can beat this, and I can do anything. There are times that I'm angry. I can't believe that there is one more stinkin' thing that our family has to face. There are times when I just can't stop crying. This is when I enter the why me phase. As I sit here typing, I realize that during none of these times am I at my best. I am at my best when I am in relationship with my Father, Creator, and Savior. I am at my best when I trust my Lord and my God. When Jesus lived on this Earth, He never promised things would be easy. In fact his words were, "Pick up your cross and follow me." Now don't get me wrong. I'm not saying God made me have cancer, made Anthony sick, or made my kids sick. Jesus knew there would be hard times, and was a living example of how to get through the toughest of times. I need to persevere, and trust in His unending love. I need to know that no matter what, His love covers me. I start most mornings reading Scripture. I read the Mass readings for each day. There are two readings that I've recently marked, that really stand out and speak to me. I read these Bible verses each day after the Mass readings. I think they are what has been helping me through.

Ephesians 4:31 - 5:2 - Let all bitterness and wrath and anger and clamor and

slander be put away from you, with all malice, and be kind to one another,

tenderhearted, forgiving one another as God in Christ forgave you. Therefore

be imitators of God, as beloved children. And walk in love, as Christ loved us

and gave himself up for us, a fragrant offering and sacrifice to God.

Anger is the easiest negative emotion for me to deal with. It gives me a false sense of control. It is too hard to be sad. It makes me be too vulnerable. It's easier to be mad that I have cancer. It's easier to be mad that there are tasks that are too painful to do for my family anymore. It is easier to be mad that my change in medication is making me tired. It's easier to be mad that my shoulder pain is coming back already after I sacrificed so much to go through radiation. When I'm angry at cancer, or medications, or just this horrible situation, it is too easy to start taking my anger out on the people that I love the most. This is why I need to let go of my bitterness, wrath, and anger. This is why I need to see myself as God's beloved child who is well loved. This is why I need to see the love that Christ had as he selflessly carried his Cross and then hung on it for three hours. He allowed people to love Him, but he did not complain or give up. He persevered and shared love with those who were serving Him. He even shared love with those who didn't understand His journey. Please pray for me that I may work through these negative feelings, surrender them, and then allow my loving God to carry me as I carry my Cross. Please pray that I may not be so prideful, and that I may be better about processing my negative emotion letting go of my negative emotions. When I am living in negative emotions, it is too easy for me to take them out on the people I love, and that won't help me to heal. Please pray that I can face them so that I can surrender them, and act with love. This is my deepest desire. It is not easy for me to share this or be this vulnerable.

2 Thessalonians 1:2 - 4, 11-12 - Grace to you and peace from God the Father

and the Lord Jesus Christ. We are bound to give thanks to God always for you,

brethren, as is fitting, because your faith is growing abundantly, and the love of every

one of you for one another is increasing. Therefore we ourselves boast of you in the

churches of God for your steadfastness and faith in all your persecutions and in the

afflictions which you are enduring. To this end we always pray for you, that our God may make you worthy of His call, and may fulfil every good resolve and work of faith by His power, so that the name of our Lord Jesus may be glorified in you, and you in Him,

according to the grace of our God and the Lord Jesus Christ.

As I read these verses in 2 Thessalonians, I am reminded that through this journey that I am growing in faith. I am being purified in the fire, and perfected for Heaven. As I attempt to live a life of faith through the struggles put before me, I can glorify God. That is amazing to think about. My purpose in life is so much bigger than me. My purpose in life is so much bigger than anything that I will ever suffer here on Earth. Don't get me wrong, suffering is not easy. I'm not walking down the street looking for suffering or welcoming it in. In fact, I stink at accepting suffering. When I learn that carrying this cross with love and faith can prepare me for the love of my God in heaven though, there is nothing that Christ will not be able to accomplish through me. This is a truly humbling experience. It also seems near impossible. I cannot do this on my own. Please pray that I may trust God to get me through this. Please pray that I may trust in the guardian angel and patron saints that God has given me. Please pray that I can trust in the many prayers that are being lifted up for my family and me. Please pray that I can look past the suffering and see the love that is being poured out for my family during this journey. Please pray that I may step back and watch God's glory shine.

So, that is where I am at emotionally and spiritually. That is what has been on my heart a lot lately. That is what has been so hard for me to share. I figure if I don't share all of me, then what is the point of this blog. We as a society spend so much time dressing up our lives and making them look perfect for that perfect picture, or that perfect post. Well I guess it's time for me to get real, and realize that there is nothing perfect about cancer. There is no way to sugar coat it. Living with cancer stinks! Now please don't get me wrong, there is a lot of beauty in my life. But when I blog about my journey, I'm just writing fiction if I don't share my inner struggles with you too.

So, what is actually going on with our physical bodies on this journey? That is a little easier for me to talk about. Ever since I became a medical mama, the physical part of the journey has always been the easier part to share. I'll break it down by person since I know many of you want to know about all of us.

Anthony was finally given a semi-helpful diagnosis. He has psoriatic arthritis. This would be why some of the treatments they have tried to use for his chronic leg and back pain have not worked. With this recent diagnosis he is being referred to an orthopedist. The hope is that they can help him get to the bottom of some of his pain and how to treat it. He is a rock star as he works through his pain on a daily basis. He often takes his day one moment at a time. When I think of Christ calling husbands to lay down their lives for the good of their families, I picture Anthony. Not only does he work his tail off in his full time job, he wakes up every morning to be at the pool by 6am so he can swim before work, he also comes home every night to partner with me in taking care of our kids and making sure that my back gets to rest while he usually takes care of Daniel's night time medical needs. On top of all of this he is finishing up on his Bachelor's Degree through an online program. Anthony is one of the most selfless people that I've ever met, and I am grateful for the example he is of how to truly love.

Sarah and Daniel are both stable right now. Their counts are looking good, and their health is the best that it's been in years. We believe that part of this is due to a trial that they are a part of right now. Daniel and Sarah are both taking a natural supplement called quercetin. It is a yellow powder that we mix in applesauce for Daniel, and vanilla yogurt for Sarah. Their doctor is currently conducting this trial to see if quercetin can suppress bone marrow failure, and prevent cancer. So many people ask us how we know if it's working. Well in this type of study, no news is good news. Neither of them are in bone marrow failure. Neither of them have cancer. Praise God! For this we are truly grateful! We pray that Sarah and Daniel continue to defy odds, and laugh in the face of horrific statistics that we were given upon diagnosis. We are currently planning some of their regular appointments. So, we will be headed to Cincinnati in October. They will both need their routine bone marrow biopsies, brain MRIs, and abdominal ultrasounds. They will both also be seen by several specialists. We are continuing to home school. Sarah will be starting her third grade year, and Daniel will be starting kindergarten. They are both very excited.

Kyle is still learning to live with insomnia. He tends to fall asleep in the early morning...think 3am-5am. This makes it almost impossible for Kyle to wake up and be in a school desk by 8am. He is now attending an alternate program that meets in the afternoon. He arrives at school at 11, and is dismissed at 3. This is an online program that allows Kyle to work at his own pace. He is in his second week of school, and is finishing up his first class, and will be moving on to his second. We hope this continues to be a good fit for Kyle as he finishes up his high school career.

Ryan is still working hard! He moved back home over the weekend. He is now living a lot closer to work, so won't have to drive so much. He is learning some good work ethic, and we hope to help him save some money. He is talking about going back to school in the spring, we will see what God has in store for him.

As for me, there are some mixed reviews. I seem to be healed from my bout with c-diff, so I am grateful! I hope to never have to go through that again! It has been nice to be back home with my family, and no longer needing to be scared of passing this awful bacteria on to them. I received CT scans several weeks ago that showed spread of my cancer in my pelvis, thoracic spine, and neck. It is thought that this spread could have happened when I stopped my immunotherapy and chemo therapy to have palliative radiation on my shoulder. What is also confusing is that my labs are really saying the exact opposite of what the scans are showing. My blood draws are showing an increase in bone health. In fact my numbers are almost in the normal range, and have been cut in almost half. This does not make sense at all. The doctor would like to order a PET scan to ensure that this is actually cancer growth, and not something else that is going on. My insurance company will not currently cover a PET scan though. They for some reason do not think it is medically necessary. Although we will proceed differently if there is cancer growth verses something else going on with my bones due to one of the bone strengthening medications that I'm currently taking. If this truly is cancer growth, it explains the increase in pain that I am having in my pelvis, spine, and neck. It is becoming difficult for me to do laundry for my family. Daily tasks that require a lot of bending or reaching are also difficult for me. I still love to cook on occasion, but even too much time standing in the kitchen is hard on my back. This is when I need to realize that my worth is not in what I accomplish, but who I am. There are amazing people who are helping our children with meals, or doing laundry, due to your generosity we are still able to have someone come in and help with the bigger cleaning tasks, and for that we are forever grateful. My last set of appointments to see the doctor and get my immunotherapy and chemotherapy infusions were postponed due to my hospitalization a few weeks ago. I am finally seeing my doctor tomorrow. We hope to be able to order the scans that we need, and make a plan of action. I will also receive immunotherapy, and chemotherapy as long as my labs check out. This will be my fourth dose of chemo. When we first added chemo, I was told that I should probably only receive 4 doses of carboplatin. So, we will see what my doctor suggests, and what we are comfortable with. I know that I want to do whatever I can to fight this cancer. I have too much fight left in me. So tomorrow will be a long day. Anthony's dad will come over and watch the kids while we head to the hospital. If history repeats itself, I will start to get nauseous and tired tomorrow night, and then sleep most of Friday and Saturday. After that I will slowly start to come out of it, but the nausea continues for several days. I'm hopeful that it won't last too long this time since Anthony and I celebrate 19 years of marriage on Tuesday. God is good! There is my rainbow!

So, I think that gives you a pretty good picture of what is going on in our lives right now. We want you to know how much all of the love and support have meant to us. From the generous donations of money to help us pay our medical bills, co-pays, housekeeping, proper shoes, head wraps, healthier foods, and such an ease of mind; to the amazing meals that are made for us; to the people who help us watch our kids; and now people who help us with laundry; we are amazed by the love that people have shown us. You each are such a gift to us! Please know how much we appreciate your prayers! Please know how much we appreciate you calling to check on us, or sitting down to chat with us. Thank you, thank you, thank you! Please also know that you are in our hearts and prayers as well! We all pray for you, but please know how much our little ones especially love praying for you! You know what they say about the innocent prayers of children. So know that you are truly loved as our family prays for you.

I will try to be better about updating you. I will try to swallow my pride, and let you all the way in to what is going on in our lives. Thank you for being on this journey with us! Until next time, we will be connected in our hearts and prayers! Jesus, we trust in You! Pope Saint John Paul II, pray for us! Padre Pio, pray for us!

If you are local and would like to sign up for any of the wonderful ways that people are helping are family, here are the links. Again, thank you all for your love and support!

https://www.signupgenius.com/go/10c0d4faba92ba4fc1-childcare

https://www.mealtrain.com/trains/vqy348

Love you all!