Caregiver for Dad

Am710

Hi everyone.  I'm the new kid on the block.

My name is Amanda.  I'm 28 (for like another thirteen days..ahh) and I'm from Indianapolis.  My dad (age 57) was recently diagnosed with Stage 4 Esophageal Cancer.  Adenocarcinoma.  He has mets in his brain, liver, and lungs.  He was diagnosed in May.  His only initial symptom was trouble swallowing.  I got married in May, and I started noticing some changes the week of my wedding.  He had lost weight and he was really confused.  He forgot where the venue was and was late for the rehearsal dinner.  He forgot that he had dropped off my dress at the dry cleaner.  I initially chalked it up to wedding-related stress.  

Then it got worse.  I finally tricked him into going to the ER after he forgot where he lived and called me to get directions to his house.  My initial thought was early onset Alzheimer's or a stroke.  But nope, they found brain lesions.  They did an abdominal CT and found liver and lung lesions.  They did a biopsy and confirmed that it was indeed cancer and that it had originated in his esophagus, which explained his swallowing issues.

They began whole brain radiation, but suddenly his oncologist didn't want to treat his cancer.  She wanted him in hospice because he was "too confused to understand the side effects of chemo".  She lied to us about the chemo--she told my husband and I that it would poison us and that we would basically have to follow my dad around with bleach and spray everything he touched to keep the chemo residue from burning us.  

My dad was insistent that he wanted to fight.  Even in his confusion.  So we found another hospital (a cancer treatment center) and got a second opinion.  While the new oncologist agreed with the diagnosis, she disagreed with the treatment.  He is doing Fulfox and has had one infusion so far.  He will have another in a couple of days and four more over the next two months.  He will also have cryotherapy to try to freeze his esophageal tumors out.

My husband and I brought him to live with us.  I had to leave my job to stay home with my dad, and it's proving to be a challenge.  I'm doing an important job as a caregiver, but I do miss working.  

So here I am, trying to connect with fellow caregivers!

Noellesmom

Welcome

It is a very important job you are doing but I can understand you miss working.

Be sure to take care of yourself during this process.