A journey to come home: Around 3 weeks... - Advanced Prostate...

Advanced Prostate Cancer

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A journey to come home

ArabianNights profile image
4 Replies

Around 3 weeks ago I put a post up asking for prayers. I want to thank you all for your thoughtful comments and keeping us in mind. I pray for you all daily.

As an update, my dad is currently in palliative care at home. I wanted to provide a bit of back story on the situation - both the bad and good moments this past month.

My dad was on abi and started progressing. He was getting sicker in June but was still active (just a slower version of his normal self). He did one round of chemo on June 28th and tolerated it quite well.

On July 16th, we had an appointment with his oncologist. His bloodwork looked good and was trending the right way. It seemed like the docetaxel was working and he was scheduled for his next round. On July 17th, he ended up in an ambulance. He had a fever that spike to 39.3 degrees, his hemoglobin dropped drastically in one day, his other bio markers were off the charts (LDH 5000, ALP 1000, Ferritin 26,000 and much more inflammatory markers) . He was weak but still walked himself into the ambulance. A lot changed from the day before. Because of the fever and the drastic changes from one day to the next, two prostate cancer oncologists suspected something else was going on.

He was in the local hospital and they did everything they could to find the cause - from a medical perspective they were good. From a patient care perspective, it was a nightmare. They put him in isolation as they started testing him for infectious diseases and was very rarely checked up on (even the nurses told us it was too much of a hassle). Visitation was extremely limited. He wasn't answering his phone and the nurses would get frustrated and were rude when we would call for updates. He could barely move. His fevers continued to spike to 39 and above and all they did for him was give him Tylenol. At this point he was very weak. There are so many more negative things I could say about this.

After 2 weeks, and knowing how miserable he was with treatment, we decided to bring him home. No cause was found and Tylenol was the only treatment. Bringing him home, we realized two things (1) he seemed to have lost 90% of his hearing in 2 weeks. (2) When his fever spiked, he would cry and yell in pain. It hurts me to think of those 2 weeks in the hospital with no pain medication and no one to advocate for him.

We took him to the city hospital where his oncologist is based. There they began pain management and he stayed there for 10 days. After his horrible treatment before, we never left him alone (lucky guy has 4 daughters and an amazing wife).

In the end the conclusion was this is indeed the cancer but an abnormal presentation with such high fevers and such drastic change quickly. No brain mets were found. We have now brought him home for palliative care. His fevers continue to spike and the breakthroughs are quite intense.

While taking care of him at home has been difficult, we are thankful he made it. My dad has always been a busy body, never sitting and always moving around. Now that he is sitting still, he is taking the opportunity to tell us all his life stories (thank goodness for the Pocket Talker, he can hear us). I love these moments. He still enjoys bossing us around the house, which once annoyed me but now I appreciate. He also has a new found desire for sweets, and I am not denying him any.

I hope my family and I can give him the best life in the weeks to come, and enjoy the moments we have with him.

Thinking of you all always.

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ArabianNights profile image
ArabianNights
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4 Replies

Whoa nelly! Horrific ! I’m so sorry this happened to him. His saving grace it you all.. Deny nothing love him much . With tears in my eyes I’m happy his girls surrounds him. What a blessing. Good job getting him home .. I m praying for mercy . 😩🙏

greatjohn profile image
greatjohn

he sounds so lucky (In this unlucky situation) to be surrounded by loving and helpful daughters and wife. He is blessed. Prayers for a peaceful rest of his journey.gJohn

j-o-h-n profile image
j-o-h-n

Love him, Kiss him, Hug him..... ask him all the questions about his youth. Make note of exciting and funny stories that he tells. I will pray that he suddenly turns the page back to his walking around and being a "busy body". He is blessed with five wonderful women to love him and to take care of him. Rahimakallah...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/21/2021 10:23 PM DST

erjlg3 profile image
erjlg3

Blessings on all of you. I'm so very sorry this happened to your dad. Enjoy every second. I hope it's a fluke and this turns around and Dad starts getting around again🙏❤🙏Most sincere,

🌻Jackie

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