Belated update. Biopsy tomorrow. Back to normal?

Well, friends and family, I often have great intentions of updates that don’t come to fruition. Or I go through a day thinking of all the fun little things I could share and then become too lazy. But because I am so thankful for your prayers and it is so clear that you are praying and He is answering, it is a gift to myself to keep you informed and receive the blessings of your prayers and encouragement.

Yesterday was another long day at the doctor. I take the ridiculous amount of medicine each day but it’s on Mondays that I do all the activities related to the trial – bloodwork (the results were met with more cheers and excitement from doctor and nurse because my blood counts and liver numbers still look really good!), meet with doctor to discuss/review side effects, then do an EKG and EKG and EKG and another EKG … and did I mention that I do an EKG?! I have 4-5 throughout the day according to my last dose of medicine. They are gathering data to assure the FDA that there are no heart risks associated with the medicine. Or, some Mondays, like next week, I wi spend all day with intermittent blood draws (they are evaluating how my body metabolizes the medicine over time) and more EKGs. While it’s more tedious then stressful, it’s really a joy to have access to these medicines and participate in the trial that will hopefully benefit others. Most of what I am doing is related to data collection for the trial – not data collection relative to my specific treatment or progress. And this regimen will scale back over time.

Along those lines, the study requires a follow up biopsy on my liver and that is scheduled for tomorrow. The results are entirely for research and I wouldn’t normally receive any information but our doctor has requested that they get enough tissue to send for local pathology as well (the one helpful thing we may learn is if there is a change in the growth rate). The biopsy is paid for and done as a part of my responsibility for the study – to evaluate how the combination of medicines work within the tumor and look for early indicators of effectiveness. No one gets too excited about an extra biopsy but I am sincerely thankful for those that have gone before me – and, in turn, thankful for opportunity to help those that will come after me. Albeit a painful way to help them 🙂 During my last biopsy, at the hospital, I was watching the needle on the screen (they use radiological imaging to guide the needle to the tumor) and, while I watched, could feel everything they did. That’s a low. Before they started, they told me they were going to numb the area locally and give me some medicine that “makes you not give a damn”. But after they started, I had to stop them and say, “for the record, I still give a damn” because I was completely coherent and I could feel everything they did. So, in the middle of the procedure, I asked them to stop and then watched on the screen as the needle came out. It was a low. Needless to say, they made some adjustments. There is something interesting about my body and pain … It’s a weird combination of seeming to endure pain pretty well but not respond as doctors expect to pain management medicine. I’ll probably be a little more vocal tomorrow about the required numbing procedures 🙂 The procedure is in Addison at 8:30. I would love your prayers for a pain-free, trouble-free, effective biopsy.

In addition to my belated update and biopsy tomorrow, I just wanted to share that I feel like we are returning to a sense of normal – a new normal. It’s a new normal filled with lots of love and support as well as doctors appointments – but it’s an increasingly familiar rhythm of childcare for Linc, appointments, and adjustments for all of us. We are thankful for that. As well as for the meals and help and notes and incredibly generous financial gifts that ease our burdens in every way.

Lincoln continues to be the hardest part for me and Scott. It’s very weird to see that so much is happening in his little world and yet realize that he is completely oblivious. We aren’t hiding anything and talk about doctors and cancer but he has no comprehension of what that means. I sincerely believe that much of that is Gods grace and protection for him. But, as his mother, it is hard to look at him and see such a happy little boy that is also going through a great (invisible to him) trial. Copying my friend Sterling (one of my Pink Not Grey friends who is also the mother of a 3 year old) I am trying to teach him to memorize our pastor’s words from the email I posted and his sermon: God is good, God doesn’t make mistakes, God can be trusted.

Last night, as he was getting ready for bed, he said: when I get big are you gonna let me chew gum?
Me: Sure.
Linc: when I get big are you gonna let me drive the car?
Me: Sure.
Linc: when I get big are you gonna let me drink coffee?
Me: Sure!

This conversation was random and funny until 3 seconds later – as he proceeded to the potty and I proceeded to realize that I may not be around when he is chewing gum, driving the car or drinking coffee. And that still stinks. And is heavy. And brings tears as I told Scott. So, again, I will preach to myself as I preach to him: God is good, God doesn’t make me mistakes, God can be trusted.

Follow up note:
Some of yall have asked for the link to the sermon referenced in previous posts. [Before Christmas, our pastor included our story (and a video of us) in his sermon.] The hyperlink above will take you to his sermon and our video (assuming I did that correctly). His words were sweet encouragement to us – especially his thoughts about Lincoln.

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20 thoughts on “Belated update. Biopsy tomorrow. Back to normal?

  1. Praying they give you good meds for tomorrow and you don’t feel a thing. Story about Lincoln brings me tears. I still pray you will see him drive, chew gum and drink coffee but trusting with you that He is good, doesn’t make mistakes and that we can trust Him no matter what. Love you so much friend!

  2. Prayers…..prayers…..prayers
    You are an inspiration
    Thank you for taking the time to help us know how to pray for you – your family and your medical team
    You are a fabulous witness for our Lord

  3. Praying for this morning, the way you continue to love your son and that your time with him will be multiplied. Love you dear friend.

  4. Jennifer, this is Julie-Russ’ wife. Though I don’t know you that well, I want you to know that I read all of your posts and am praying fervently for you! What a beautiful witness you are to Christ as you walk through this amazingly difficult trial! I know you are accomplishing much kingdom work for our Lord as you continue to speak of His grace, love, and goodness despite your circumstances. Your posts convict me that I don’t trust my Lord with every aspect of my life on a daily basis as I should. As you reminded me in your recent post-He is good; He NEVER makes mistakes; He can be trusted! I pray the procedure this morning goes pain free and smoothly. I pray for the Lord to completely heal you of cancer. I pray He will continue to comfort and strengthen and encourage you! Press on!!!

  5. Praying for you sweet girl!! you are an amazing person. Hold fast to your rock and anchor in the storm, Jesus Christ Our Lord and Saviour. Prayers for you and your husband and your son.

  6. No matter when or how often the updates come, they are ongoing evidence of the beauty of Christ in your life and heart. Praying for you now as you start the biopsy…8:17 am from the Whole Foods parking lot. I’m thankful for you and pray for comfort and grace to envelop you. ❤️

  7. Thanks for the updates. I will continue in prayer for you and your family daily. Thank you for sharing the details of your struggle and your pain. It is a great ministry to us, your Christian family, and a privilege to pray with you and for you.

    Part of my discipleship ministry last year was writing a biblical response to whatever moral issues were trending. One of my papers was a biblical response to Brittany Maynard, the girl who moved to Oregon so she could kill herself under the “death with dignity” law. In one part of that paper I answer the question, “Is Suffering Good or Bad?” I thought I would send you this excerpt since we share a love for the Word as well as a godly perspective on suffering.

    ~ Becky May

    Is Suffering Good or Bad?

    Suffering is good because it gives us an opportunity to entrust ourselves to God. Our attitude in the midst of our suffering should be like that of Christ, who while suffering, … kept entrusting Himself to Him who judges righteously (1 Peter 2:23). Though Christ was not suffering as a result of natural causes, such as disease, He did suffer physically. The Greek word translated “entrusting” means “to hand over, to give.” Thus Christ, in the midst of his pain, gave Himself over to the Father. He gained peace by entrusting Himself to God (2 Corinthians 6:4).

    Suffering is good because it gives us an opportunity to learn obedience. From Christ’s example we know that there is another benefit to suffering. Although He was a Son, He learned obedience from the things which He suffered (Hebrews 5:8). Whether the author here is referring to His emotional suffering or His physical suffering is not known, but we can learn and thereby benefit from our suffering, whatever its cause or form.

    Suffering is good because it gives us an opportunity to acknowledge God’s sovereignty. From Job’s example, we can see another benefit of suffering. Job’s friends sat down on the ground with him for seven days and seven nights…, for they saw that his pain was very great (Job 2:13). Job’s friends recognized the sovereignty of God in Job’s situation. For He inflicts pain, and gives relief; He wounds, and His hands also heal (Job 5:18). But they did not understand the value of suffering as Job did. But it is still my consolation, And I rejoice in unsparing pain, That I have not denied the words of the Holy One (Job 6:10). To acknowledge God as being sovereign over our suffering and still rejoice in His Word is a display of righteousness as well as a source of consolation in the midst of unsparing pain.

    Suffering is good because it gives us an opportunity to become a blessing to others. When Paul first brought the Gospel to the Galatians, he was suffering from a bodily illness. What Paul called a trial to you in my bodily condition was a blessing to the believers in Galatia as they suffered with Paul who said of them, if possible, you would have plucked out your eyes and given them to me (Galatians 4:12-15. See also Matthew 25:43-44).

    Suffering is good because it gives us an opportunity to seek and see God’s mercy. The Philippians were longing to see Epaphroditus, Paul’s friend and co-worker in the faith. When they heard that he was sick to the point of death, they were distressed. But, as a result of Paul’s letter, the Philippians were able to praise God for His mercy, so that Paul would not have sorrow upon sorrow (Philippians 2:25-27).

    Suffering is good because it gives us an opportunity to be reminded of our spiritual condition. Physical illness is a good picture and reminder of our spiritual sickness. And hearing this, Jesus said to them, “It is not those who are healthy who need a physician, but those who are sick; I did not come to call the righteous, but sinners” (Mark 2:17).

    In those times of suffering when our pain seems pointless or when we become discouraged because we can’t get better, no matter how much we try. We still can be encouraged, in the midst of our pain, that there is real good which benefits us and those around us, as a result of our suffering.

  8. Hey Jennifer – I continue to pray for you, Scott, and Lincoln every day. Thank you for the update and I’m glad your bloodwork looks good. Praying you have lots more time with your sweet boy. Much love to you.

  9. Hey Jennifer,
    I hope your biopsy went well. I’m thankful for you and your bravery to do these trials. I know they are not fun. I see you picking up where my mom left off. She endured over 15 surgeries and many, many biopsies and 12 or so years of clinical trials. The last trial she was on was in 2012. I know that she also felt good that she was helping scientists find a cure.

    I have to admit it’s a little eerie for me to read your blog because the type of breast cancer, your doctor at MDA, and they way it spread are the exact same as what my mom had. I was in denial and never wanted to know the details. I never once went with my mom to an appointment except for the time I had to have my blood taken to see if I was a match for my mom to get a bone marrow transfusion or something like that. It was too painful to watch my mom go through all the things that you are going through now and I even gave up on praying for her. I got so used to her having cancer, and she didn’t look sick b/c she wasn’t on chemo, that I just pretended that she was fine. And then she got really sick on a trial –i wish I could remember the name of this drug because while it was actually shrinking the tumor in the lymph node behind her lung, it caused pulmonary problems and that is ultimately what ended her life. I’ll have to ask my stepdad so you can stay away from that one!

    I don’t know if you read my last post on your blog, but my mom was diagnosed with Stage IV Metastatic breast cancer in 1999 and Dr. Osbourne at MDA gave her 2 years to live and she lived for 14 years. She was a big advocate of researching all of the clinical trials. She would tell him about trials that she wanted to be considered for!

    She was in many trials. The first one was a clinical trial for 8 years that really worked for her but not the other women in the tria. So then, they made the drug just for her for another year (it was Eli Lilly and they were testing a drug to see if worked better than Tamoxifin). After they said they wouldn’t make it for her anymore, she started hopping from trial to trial –every 3 months she would get a PET scan and if the tumor markers were bigger, they would switch her to another trial (that she qualified for). That was no bueno because sometimes the drug would burn her throat and she had to swallow it wrapped in a marshmallow. I always felt so alone because I would watch my mom take 10+ pills and do things like swallow pills with marshmallows. She would show me the tumor on her back that was poking out, and I just didn’t know how to handle it. I couldn’t talk to any friends about it because no one understood. Even though I was in community, they had no idea what I was going through and I pretty much blew up at them because one of the girls said that my mom dying was the exact same thing as a 92 year old lady dying…needless to say, it ended poorly 😦

    So, all that to say, I so appreciate you giving us a peek into your world because it’s healing for me in a way. And I pray that these trials will give you many more years. I hope that is an encouragement to you! Praying that you will have many more years with Lincoln. I was 25 when my mom’s cancer came back and God was gracious to give her more than 2 years. He answered her prayer to know her grandchildren and she lived to see me get married and know all of her grandchildren enough that they would remember her and she lived until I was 37.

    Praying for you!

  10. Tests etc. really sound good. Precious Lincoln. Jeff says he is so cute. I am for hire for baby sitting. You have so many friends who love you so much. And, so many who want to help. Dumb me does not know what a hyperlink is . But, would love to see it. Reading your e- mails and knowing what faith you have has certainly strengthen me. If you can go through all what you are going through and believe——God is good, God does not make mistakes, God can be trusted , you and Scott will have the strength and to do so. Love , Anisse

    Sent from my iPad

    >

  11. Praying for you and your sweet family! It was so good to see you the other night. Please know so many of my friends and family you don’t even know are lifting you in prayer daily. XOXO

  12. Praying for you and your sweet family, Jennifer. Lifting you all up to our great God, who never makes mistakes! Thank you so much for sharing. I know that of all the things you could be doing, writing updates is not at the top of the “most important” list but it means so much that you take the time to share your life and testify to what the Lord is doing in your lives. Much love to you all.

  13. Lord, prepare lincoln’s heart and home for whatever journey you have for him- I pray those words seep into the deepest part of his being and permeate his life in a way that brings glory to you and richness to others. Love u lulu. Praying.

  14. Finally got a quiet moment to watch Todd’s sermon & your video interview. Please thank Scott for the permission to grieve. I’m crying like a baby right now. I’m truly heartbroken for you & your family to be faced with this storm. At the same time, I trust that God is good, that He doesn’t make mistakes, and that He can be trusted. I love you, dear friend, and am so challenged & encouraged by your faith. On my knees begging God for mercy, to extend your life, & for His presence to be your anchor.

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