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Facing Mesothelioma One Journal Entry at a Time: Part Six

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 five of this story, click here.

Prayer Needed Now
Journal entry by Rich DeAugustinis — 9/27/2016

Tara woke up this morning with chest pains and shortness of breath. We are presently at the St. Joseph’s ER to get tests and to find out what’s going on. The last 24 hours has been a deviation from her great recovery since surgery. Please pray that the doctors quickly find and address whatever is causing these issues, and that they pose no problems for her continued recovery from surgery. Also pray for her to tangibly feel God’s presence today, and for peace that transcends understanding. Will provide an update later today.

Brief Update – Speed Bump
Journal entry by Rich DeAugustinis — 9/27/2016

Really quick end of day update… We are home after spending the day in the ER today. Tara was diagnosed with pericarditis, which is inflammation of the heart lining. This is not an unusual issue following major thoracic surgery like Tara had. She had part of her pericardium rebuilt with bovine tissue as part of the surgery, so while this wasn’t expected, it’s also not unusual. They ran a battery of tests to rule out much more serious and sinister diagnoses, and ultimately sent her home with a prescription for some major league ibuprofen to reduce the inflammation. She is already feeling better, but will need a lot of rest in the coming days as she gears up for radiation, which begins next Monday.

Thank you for your prayers today, and your many messages of love and support. We appreciate every single one. Please keep her in your prayers in the days ahead…for continued healing and recovery from the pericarditis, as well as the surgery. And for strength and endurance to build as she starts radiation. Also, please be in prayer for wisdom on the way forward with clinical trials. We have a meeting Friday morning with the oncologist to review the results of the genetic testing on her tumors, which will inform next steps for immunotherapy clinical trials beyond radiation. Pray for wisdom for the doctors, and for us as we evaluate options and make decisions in the weeks ahead.

As always, thanks for your love, support and prayers for Tara and our family. God bless each and every one of you.

“Rejoice in hope, be patient in tribulation, be constant in prayer.” Romans 12:12

His Grace Abounds in Deepest Waters
Journal entry by Rich DeAugustinis — 10/17/2016

One of the songs that I have clung to through Tara’s cancer journey is “Oceans (Where Feet May Fail)” by Hillsong United (https://youtu.be/dy9nwe9_xzw). The whole song is amazing, but this verse really speaks to the storm that has been our 2016:

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now

You see, the song alludes to Matthew 14:22-33 in the Bible, where Peter is called out by Jesus to walk on the water. Peter did so, but temporarily lost faith and started to sink (“where feet may fail”), so he was forced to call on Jesus to rescue him.

As I reflect on the last 8 months, we have clearly been in deepest waters. There have been times when we have been overwhelmed beyond belief. At times, we have felt like the ocean is rising around us with no way out. But through this — all of this — His sovereign hand has been our guide. He has not failed us. He has brought Tara through 6 rounds of chemotherapy. They were tougher than anything she has ever experienced, but Tara persevered through His strength. He brought her through miraculous EPP surgery, and a swift recovery afterwards. And now into hopefully the final phase in this long journey — radiation.

Tara started radiation two weeks ago today, and is now through 10 rounds of 35. In my last update, she had gone into the ER with some concerning symptoms that turned out to be pericarditis (inflammation of the heart lining). Over the last few weeks, she has slowly but surely improved. While the pericarditis is still there and likely a fixture of her situation until later this year, she is getting better. That said, the radiation is taking its toll, as expected. She continues to deal with fatigue, and the radiation is messing with her appetite and her sense of taste. That said, on Friday she received IV fluids, which helped hydrate her and generally improved her overall state. She will be getting that 2x/week through the final 5 weeks of radiation.

The next 3 weeks she is getting radiation across the entire right side of her chest cavity. The purpose of this radiation, part of the “standard of care” for meso patients, is to kill any microscopic cancer left in the chest cavity where the lung and pleura were. As I mentioned in my update after surgery, they got ~99% of the cancer out. There are still two places where they think there is enough cancer remaining to hit it hard with extra radiation: 1) the thoracic inlet under her collarbone (where there is definitely visible tumor left), and 2) the apex where the right part of her diaphragm and the chest wall come together (where they believe there is microscopically small cancer remaining). The last 2 weeks of radiation will be a “boost plan” where they turn up the rads to focus on these two areas, with the intent to melt the remaining tumor away. Unfortunately, that is also the part that will be hardest on her, right as we go into the Thanksgiving holiday. But after Thanksgiving she will be done with radiation and be on the mend. We are praying for her rapid recovery after Thanksgiving as we move into the Christmas season.

We are thankful to have so many of you on the journey with us. I can’t tell you how much it means to us to not face this alone, but on the waves of countless prayers from each of you. We are so grateful for the meals, the cards, the texts, the flowers, the visits and more. You are the body of Christ, the hands and feet of Jesus, and Tara feels His presence daily through you. I encourage you to keep sending Tara cards and texts. I can tell you they lift her spirit and energize her each and every day.

We are also super thankful for the many of you that have participated in the meal train over the last couple months. This has been a true blessing to us, detasking us of meal planning and preparation during a particularly challenging time. I cannot tell you how much your generosity and support has meant to us on this. Many of you continue to ask how you can help. Always prayer (more on that below), but I also wanted to let you know that we will be extending the meal train through the end of November to help us through the challenging weeks ahead with radiation. I will add those dates to the meal train site on THURSDAY EVENING, so be on the lookout for another post/email with the link to the meal train site.

Thank you for your continuing prayers. We are convinced that your prayer has great bearing on the direction of our journey to date, and where it’s going in the months ahead. So keep praying:

– For Tara’s continued healing from surgery and the pericarditis
– For the radiation to be completely effective, fully eradicating any remaining traces of mesothelioma in Tara
– For strength, endurance, resilience, comfort and freedom from pain as Tara completes radiation over the next 5 weeks
– For our family to continue to love and support each other through this by His strength
– For God to continue to use this journey as a mighty testimony for fellow believers and non-believers alike

We remain optimistic about the future, and Tara’s prospects to beat mesothelioma and become a survivor. We continue to pray fervently and without ceasing for this outcome. But it’s not our outcome – it’s His. We have faith in his providence. You see, we don’t get the grace to go deeper so we can ponder the possibility of doing so. We get it when we are in deepest waters — where He puts us (and is with us). We have to let go of our desire to control, to manage, to fix. We have to let go, and let Him have it. The next verse in “Oceans” is this:

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

So in the weeks ahead, we will keep our eyes above the waves and on Him. We will call upon His name and rest in His embrace. We will let Him continue to lead us through this, leaning on Him to walk upon the waters.

Love in Christ,
Rich

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

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