More than a Caregiver, Being a Patient Advocate is Critical

The Notebook pays off.

In two previous posts, I mentioned that they would be using this time to take another biopsy of the tumor and bone marrow.

I mentioned this in the Texts to A Friend and Texts to Mat’s Stepmom.

From The Notebook I have notes 

 - 7:30 a.m. Dr. Gonzales came in (so at this point Mathew is still on 5 South).

 - 8:45 a.m. A member of the Medical Oncology team came in and mentioned another biopsy. 

 - 10 a.m. Dr. Creelan from Medical Oncology

Then, we get the news Mathew is being transferred and that Dr. Damon Reed will be the head of his oncology team. Dr. Reed is the head of the Sarcoma Clinic and that the diagnosis is Desmoplastic Small Round Cell Sarcoma.

No New Biopsy is needed!

 - Then Mathew is transferred.

 - Jennifer Shaw, the pharmacist in charge of chemo, comes in and spends a lot of time explaining the different types of chemotherapy Mathew will receive. (I will cover this in a separate post). 

 - Melanie Sheen also comes in. She is the same member of the Medical Oncology team that told us about a new biopsy.

 - This visit she confirms that no new biopsy is needed. Chemo will start in the afternoon and she gives me her pager number (it’s in The Notebook) if we need anything today.

This is all very important for telling you what happens just a few hours later.

Later, Mathew and I are in his room, someone from transport comes in to tell us they are taking Mathew down to IR.

"Why?" I want to know. We find a nurse, who looks at the orders and says "Yes, IR is expecting him."

Of course, I go along. When we get to IR, Mathew is put in one of the curtained areas that run the perimeter and I want to know what they will be doing.

"A biopsy," they tell me. These are the prep nurses and nurse sitting at the desk who I am talking to at this point.

Mathew is so sick and in pain. This is why I always wanted someone with him. The waiting room wouldn't have been good enough, wouldn't have prevented an unnecessary and painful procedure.

I tell them that he is starting chemo in the afternoon and that a final diagnosis had been reached. No biopsy I tell them. They aren’t doing anything until they confirm this with one of Mathew’s doctors. 

If I had taken The Notebook with me, I would have had Melanie’s pager number and it would have been settled in just a few minutes. All I could remember about her (because this was our first day meeting her, was that she had on a pair of great shoes).

I wouldn’t even let them start prepping Mathew for anything. I stood next to him to conduct all of these conversations.

Finally, they reached one of Mathew’s doctors, probably Dr. Creelan, who confirmed that no, they didn’t need a new biopsy, but that decision had just been reached a few hours ago.

No procedure.

Back to Mathew’s room. 

If Mathew had gone through another painful and stressful biopsy, I’m not certain chemo could have started that night.

Later, when I filled in Arpie and Diane about what happened, Arpie was concerned that he may not have questioned it. I know Diane would have questioned it and I know as time went by Arpie learned that it was all right and necessary to question everything. As a patient and a caregiver, we are part of our care team and have a responsibility especially because Mathew was so ill and not always able to advocate for himself.