Facing Mesothelioma One Journal Entry at a Time: Part Nine

Tara DeAugustinis

Tara DeAugustinis has been battling pleural mesothelioma since diagnosed in early 2016 at the age of 45. She and her husband, Rich, have maintained a personal website documenting her journey with the disease via journal entries, and they have decided to share their story with the mesothelioma community. To read part eight of this story, click here.

Extending the Meal Train Again
Journal entry by Rich DeAugustinis — 1/22/2017

Tara, Aubrey and I would like to extend a heartfelt thanks to the many family members, friends and colleagues that have participated in the meal train last fall. It has really been an extraordinary blessing — the hands and feet of the body of Christ in action. After Tara’s surgery and during radiation, it was a relief not to worry about meal planning and preparation a few nights a week. And since we don’t eat a whole lot, the leftovers fed us a few more nights each week. It really has been terrific, and enabled me to wholly focus on Tara’s care and well-being.

As we start 2017, we have decided to extend the meal train again, albeit only 2 meals per week. While Tara continues to improve, she remains very tired and physically challenged. In addition, as she starts the clinical trial this week, we expect that the drug’s main side effect will be more fatigue. We are so grateful for the meal support to date, and are thankful for anything you can do to help.

Again, our heartfelt thanks to those that have helped to feed us over the last few months, and to those that will in the weeks and months to come. We are truly humbled by your love, prayers and support. May God continue to bless each and every one of you.

Love in Christ,

A New Hope: The Clinical Trial Begins
Journal entry by Rich DeAugustinis — 2/4/2017

It’s Super Bowl weekend, and tomorrow evening the Atlanta Falcons will take on the New England Patriots (excuse me… I threw up a little in my mouth as I thought about the cheating Patriots). It’s fitting that our hometown Falcons have a new hope this weekend – one of winning Super Bowl LI and becoming NFL Champions. We also start this weekend with a new hope – one of making progress to restrain the difficult and challenging mesothelioma Tara is battling.

As I write this, we are flying home from New York City, having spent the last couple days at Sloan Kettering. It’s been a tough week, and I think God intervened with Delta this morning to give us an upgrade to first class, knowing we needed it. We started the week very worried, as Tara’s cough continued to worsen. Over the last month, she’s been on 3 rounds of antibiotics. While they helped, the cough returned each time. So we decided to see a pulmonologist on Tuesday to get some additional evaluation. That consult turned into a decision to delay our trip to New York to start the trial, and a bronchoscopy on Wednesday morning.

The bronchoscopy turned up nothing abnormal inside her left lung, meaning the source of the cough was likely not bacterial or fungal. That also means that the “milliary nodules” that showed up in her recent lung scans are most likely mesothelioma, having spread to her remaining lung. While not good news, it does not change the way forward. The tazemetostat clinical trial is her best chance to fight the remaining meso in her body, and to control (or even reduce) it. Given that, we made a snap decision on Wednesday morning after the bronchoscopy to make a run for New York and Sloan Kettering. After postponing the start of the trial on Tuesday, Sloan Kettering was able to reset the plan so Tara could start the trial yesterday.

She took the first doses of tazemetostat yesterday, and so far, so good… no apparent side effects. God willing, that won’t change. In addition, the doctors prescribed some different meds to manage the cough. Those appear to be helping as well. We are thankful that the drug is an oral one – 4 pills in the morning, and 4 in the evening. The worst part of it is the travel to NYC, which is a very small price to pay to participate in this trial. She will be back at Sloan Kettering weekly for the rest of February, then beginning in March it’s every 3 weeks for the next 5 months. Her next CT scan will be in mid to late March, which will give us the first indications of how the tazemetostat is working.

As usual, God has been working in our hearts and minds this week. While it’s been a long and stressful week, we conclude it with a new hope for the future. In recent weeks, the weight of this whole journey has been heavy on my mind, and I have been struggling in a big way with the “why” and “what if” questions. I have had tremendous love and support from family and close friends through this, and they have helped me to stay focused on today. Being present today with Tara and Aubrey, and not worrying about what the future holds. As I have shared before, He (God) says not to be anxious about anything:

“Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:4-7 ESV

As we embark on this new journey with the clinical trial, we will cling to our faith in the Father, Son and Holy Spirit, and the fact that He has a plan. A good one. He knows the future. We don’t, but that doesn’t matter. He wants us to focus on Him and the gifts he has for us today. He is here, and wants us to place our love, hope and faith in Him, and not to be worried about “why” or “what if”. We will give those to Him, and will continue to petition Him with our prayers for today:

– To remove all fear of what the future holds
– To help us to put our hope and faith fully in Him, confident in whatever His providence brings
– That the tazemetostat works, halting the mesothelioma in its tracks
– For Tara to continue to recover and strengthen, and for her post surgical pain to abate
– For physical, emotional and spiritual strength for Aubrey and me to continue supporting and caring for Tara – and to share the fruit of the Spirit with her every day
– That God would continue to use Tara’s journey as salt and light in the lives of others, inspiring them to belief and faith in Him

As always, we will continue to keep our eyes above the waves, on Him, resting in his peace. Your love, prayers and support help us do so. Thank you and God bless!

— Rich

Continue reading Tara’s story here: Facing Mesothelioma One Journal Entry at a Time: Part Ten

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