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September 8, 2021 - 

Just Throw It In the Bag...


Trying to keep myself and my readers updated with the latest news from our cancer journey is often interrupted by the very journey itself.


Ed had a very rough month of August. It was marked with the first treatment of chemo, the introduction of a medi-port, and mega high doses of oral chemo. 5000 mg per day (five pills in the morning and 5 pills in the evening) proved to be too much despite the formulation based on body weight, body mass, height and general health, proving that one size does not fit all.


Dehydration, along with self-inflicted “starvation” combined to create almost lethal results. A week confined to the hospital had all of us, including the medical staff intensely focused on getting his levels stabilized, his gut functioning with food, and tackling the blood clots that developed around the medi-port. I did probably the one thing I could channel my anger onto – tried to change doctors, raising hell with the cancer center, pointing out what I perceived as incompetence, poor communication and neglect. At the end of the day rattling cages and accosting all who entered the scene seemed to have an upside effect. We left the hospital having gained the respect and, dare I say, the attention of all of his “team”. Home health care was in place, private consults with the doctor and his team, and with the main cancer center (Ochsner in Lafayette). As it turns out, the Opelousas facility is a satellite of the main center, and while we may not achieve getting a new doctor, the medical director is well aware of our experience, and we have seen a difference. Thank God.


It has been my experience as a mother of a child with numerous medical issues that when you are advocating for your child, you are given almost supernatural abilities and power so as to part the sea, move mountains, or cast out demons! Like riding a bike, all of these traits came back to me as if held in reserve. My quiver was full of all the arrows I needed to slay the dragon.


If you are one of my nurse friends who took care of Emily as a private duty nurse, you will recall the communication notebook we shared and the meticulously organized supply “closet” we established. Together with your required “nurses notes” and my “mama notes”, her care was practically seamless, supplies were kept inventoried and restocked. In much the same manner, I am managing Ed’s physical care and communication methods with nurses, doctors, pharmacies, and physical therapist.


Ed will turn 73 on Friday. Not sure how we will celebrate. James will be heading to Grand Isle to assist with Hurricane Ida clean-up with a group of friends. So proud that he has a servant's heart. Emily will be bringing an evacuee home to Baton Rouge that she took in for the week. He is a friend, and someone we have known since he was 14. So, both my kids are without hesitation, open armed and open heart when it comes to assisting those in need. Guess our gift on Ed's birthday is knowing that we did something right with our kids.


Ed is slowly regaining strength, but depression is now evident. He noted, as if it was an epiphany that time marches on, and that people’s lives and activities go on, with or without him. Watching the neighbor work in his yard, the cyclist riding routinely by, the radio still playing the oldies, the news on its 24-hour cycle. Nothing misses a beat. No one seems to pause. Learning more about depression, I realize the “grayness”, the immense sadness and the weight that nothingness delivers that envelops him, and yet there is nothing I can do or say. People tell me that this is normal – a by-product of cancer. Something else to throw in the bag we are dragging behind us on this journey.

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