Hey wait a minute! That's OUR hope! (Mom update - Part 1)

Sometimes, when you're an advocate for medical care and don't just go along with anything and everything the doctor throws your way, you upset them. If that happens, it's time to switch doctors. A good medical professional should welcome and understand questions, and be a partner with you in your care. Though they are the trained professionals, they no doctor is an expert in every area. Often times, they know a lot about one specific area or treatment, and little about others.  

On Monday, I received a call from Anna, the new nurse of Mom's oncologist, Dr. Ou. Mom was already at UCI Medical getting her blood work drawn for chemo. that she was expected to receive that day. Mom had an appointment with a nurse practitioner that was filing in for Dr. Ou, who was out of town. Anna was calling to let me know Dr. Ou had decided to hold off on chemo until he saw her. Knowing Mom was there and waiting for that, I questioned why she would need to come back when he was there, and couldn't be seen that day as planned. Her response was a blatant: Dr. Ou wants to stop chemo on your Mom.

Now, let's back up a bit. Mom has two ways that she is receiving chemo: in the port in her chest (for cancer in her lungs, adrenal glands and around her pancras) that Dr. Ou orders, and through a port in her head that Dr. Carrillo or Lindsky order and administer. She also has her brain lesions periodically treated with gamma knife. Mom has not had the systemic chemo in her body for at least three weeks, because they had to install the Ommaya Reservoir in her head and it needed to heal. Last scans of Mom's chest showed that her lung mass had increased in size, and a new chemo was ordered.

So this news of abruptly stopping chemo came out of left field for me. And it was especially shocking that the decision already seemed to have been made, in a vacuum, without Mom's input. I mean, I get if the chemo is robbing you of your quality of life, but until now Mom has been tolerating it well. Though it has zapped her energy in a way I'm not sure I cannot fully understand, she still has a great appetite, is rarely sick, and is still staying strong, optimistic and positive.

So, I told Anna that I did not agree with this, and that Mom should be a part of the decision. I asked why they were planning to abruptly stop, when she hasn't had any chemo or scans recently. Presented with that info., I explained, Mom may decide to stop chemo., but it should be her decision, not ours to make without her. And I told her I do not want her to wait to see Dr. Ou. 

That's when Anna lowered her voice, and as if speaking to a child said: Megan, your Mom is very sick. Being in denial doesn't help anyone. My reaction was to actually laugh at her and respond with: Ummm...Mom is more than "very sick" she actually has cancer in her 5th area and none of us are in denial. She said she would have to ask Dr. Ou if this would be okay. When she called me back she said he reluctantly agreed. Turns out, Mom wasn't well enough for chemo anyway, and had a transfusion that day instead.

I sent Dr. Ou the following email:

> On Jun 2, 2014, "Megan H. DeWitt" wrote:

> 

> Dr. Ou,

> I hope this finds you well. Anna called me today to say that we are stopping chemo after this round on Mom? Anna told me Mom is very sick, and that living in denial doesn't help anyone. My response was that Mom is more than sick...with the cancer in a 5th area, her spinal fluid, I recognize now more than ever that she will not be cured.

> 

> I am not holding out hope that any treatment will cure her. At this point, the most I am hoping for is for the cancer to be kept at bay and maybe buy us some time. Of course we do not want to do this at the expense of the chemo killing her. But so far, this new chemo has few side-effects when compared to the previous one she was on.

> 

> If we are to stop chemo, would it be possible to help Mom reach this decision herself, after scans show this new chemo isn't slowing the growth? If her side effects are too bad, or if the scans show the growth isn't being slowed, then I'm sure Mom will make that decision. I just hate to have the decision made without her input, and without scans. Thank you for your consideration, and we will see you soon.

To which he responded with: 

-----Original Message-----
From: Ou, Sai-Hong [mailto:siou@uci.edu]
Sent: Monday, June 02, 2014 1:00 PM
To: Megan H. DeWitt
Subject: Re: Paula DeWitt DOB 6/28/1951

Megan: we will give the chemo today and next week. We are not stopping chemo abruptly. I will discuss with her about the outlook next week but we won't stop chemo unless it is her decision. Ignatius

Sent from my iPad Air 

This was a reasonable response, and set the stage for yesterday's appointment. An appointment that didn't go so well. At this appointment, Dr. Ou seemed to have one mission: to ensure that Mom had no hope. But it is this hope that has carried her along all this time. He told her that the chemo was not going to work (something no one can say or predict) and that he, and UCI, were "Happy to keep taking her money if that was what she wanted." So we reassured him, again, that we were not looking for a cure, but that if the chemo continues to be well tolerated, and it can at least possibly slow the growth, we want to continue.

Everything seemed fine until I expressed frustration when Anna said Mom was not on the schedule to go get chemo. That is how it has always worked in the past: appointment with Dr. Ou, followed by chemo. All I said was "Why isn't she on the schedule for today?" and Dr. Ou looked at mom and threatened to take chemo away, looking directly at Mom (who had not said a word) saying "If you are upset by these appointments changing and are bothered when it is delayed, maybe you should stop the chemo. One day doesn't matter."

I felt like I was in a twilight episode, and addressed him ...explaining that she was not upset, I was the one who made the comment. He didn't really respond and wrapped up the meeting. Then, his nurse came back in to apologize saying he did not communicate with her to book the appointment.

And for this reason, we are switching doctors next week, after Mom receives two additional chemo treatments: today and next Friday. Luckily, there had been a social worker in the room who picked up on the miss-communication and semi-volatile relationship between doctor and nurse (who seems to say something negative behind his back regularly, once telling me "he is angry today") and has navigated the process for us. I emailed her our decision today: 

---------- Forwarded message ----------
From: Megan H. DeWitt <megan26.2@gmail.com>
Date: Fri, Jun 6, 2014
Subject: Re: Housing List
To: "Huhnerkoch, Andrea" <ahuhnerk@uci.edu>

Annie,

Can you send this to Jennifer too? I spoke to Mom this morning on my way to work and the first thing she said was "I'm angry with Dr. Ou for saying that the hospital will just keep taking my money - there is no problem with that and then how he laughed."

We do want to move forward with switching doctors, but we are both afraid that if Dr. Ou finds out before next Friday, it could jeopardize the chemo planned for today and for next Friday. We will call the number next Friday while she is in the infusion center to schedule a follow-up with Dr. Klempner. Even if he will not do anything different treatment wise, we feel at the very least his communication and bedside manner have to be better. 

Dr. Ou's mission yesterday seemed to be to make sure that Mom had no hope. Hope is important throughout all levels of care, in my opinion. She is not in denial, or holding out for a "cure" - none of us are, but she certainly does not deserve to be treated like she was yesterday. Also, his working relationship with Anna is concerning - she seems to say bad things about him behind his back often. She even did this yesterday, saying that he did not communicate to her.

She responded with: 

---------- Forwarded message ----------
From: Huhnerkoch, Andrea <ahuhnerk@uci.edu>
Date: Fri, Jun 6, 2014 
Subject: RE: Housing List
To: "Megan H. DeWitt" <megan26.2@gmail.com>

Hi Megan,

I will forward this to Jennifer now and she can follow-up with you and your mom.

I can understand your feelings as well as your mom’s … I like to say “realistic hope” is always needed. J

I hope your mom’s chemo goes well today.

~Annie

We feel much better with this plan in place. We may not have control over a lot, but we sure the heck do have control over how we are treated. To think that doctors are the experts and must be listened to without question is a dangerous viewpoint. Always remember: you have decisions and choices, and you can advocate for yourself or your loved one when you are not being heard, or when decisions involving you and your medical care are made without you. Or when you're just not treated with the kindness and dignity that everyone deserves. Seeking a second opinion should be encouraged, not frowned upon, and you should never have to walk on egg shells around someone directing your care.