The hardest decisions to make

My Mom was diagnosed with brain cancer on November 5 and died on December 16th this past year.  They didn't tell us it was brain cancer on November 5th.  We found that out a week later after her brain surgery.  What nobody tells you is how difficult it is to navigate the medical world and how hard the decisions are to make. 

I continue to go over everything that happened in my head more often that I'd like to but I am sure over time that will change.  I wanted to share the experience, as dreadful as it was, because perhaps someone will learn from what we did.  There is no doubt in my mind that we made the right decisions at each juncture (and there were many junctures) but there is so much information coming at you that it is very hard to disseminate. 

The most important thing that kept coming back to us during the entire process is to remember who the patient was, my Mom, who lived life to the fullest.  All decisions had to be based on that. 

She knew something wasn't right.  She was having a hard time communicating and thinking.  She took herself to a neurologist who sent her for a MRI.  She had an MRI the past April and it was supposedly negative. That is another story which I won't add to this story.  I took her to the MRI on November 5th and was told to wait for the doctor to talk to me after they got the results.  He told me that her brain had a huge mass in it and that she needed to go immediately to Mt. Sinai, where he practiced, and check in to the emergency room.  It was late Friday afternoon and it was the only way he could get us a room.  Here is where my sixth sense kicked in.  Having a blank MRI in April and a huge mass in November didn't sound good. 

The week in the hospital consisted of a variety of tests to make sure the mass wasn't coming from somewhere else like an infection.  Everything was clear except for the mass in her head.  The doctors won't give you any information until they are absolutely sure.  The interns will actually give you information because they are not seasoned enough to talk to you without telling you anything. 

After surgery, the surgeon, who ended up being the most forthcoming of the bunch, told us my Mom had brain cancer.  The biopsies would tell them more in the next few days.  She would recover and then we would need to find a radiologist. 

A few days after surgery the surgeon confirmed that she had a glioblastoma, a very aggressive brain cancer.  Maybe because he had actually seen my Mom at the onset or maybe he actually heard me the best but I told him that my Mom had been quite clear since we were young children that if she couldn't enjoy her life like she did, she wasn't interested in living.  As my Mom kept repeating during this time, if they can't bring me back to where I was, then just kill me.  Thanks Mom.  When the surgeon gave me the results I told him that I was not sure that my Mom would choose to do anything.  His response was "that might be a wise decision".  I remember that so well because I wrote it down.

The one thing that we learned quickly is that most doctors won't tell you what they think.  Unless you ask an exact question to them, you won't get a straight answer.  It is truly an art form.  Everything is based on statistics and perhaps and maybe but not definite. 

Every step of the way, my brother, my sister and I would have a group call so we were all on the same page.  We were told by the surgeon that we needed to find a radiologist, which we did and we were to begin treatment 2 1/2 weeks after surgery.  You have to wait for the incision in her head to heal first. 

Prior to the radiation, they had my Mom come in for a MRI so they can pinpoint exactly where to shoot the radiation.  She was so weak that day and her eyes were just as glossy as they were prior to the surgery.  The nicest nurse helped her through the MRI.  I told her my concerns were that the cancer had come back.  Again, talk to the right people they will tell you information.  The nurse came back to me while my Mom was getting dressed and told me that I was right and there was a huge mass there.  She was so concerned that she told me if anything happens in the next day or so I should call an ambulance.

The next day, I got a call from the neurologist we were working with now at NYU.  What is amazing is you know none of these people and then they are holding your hand on life and death decisions.  This particular doctor recommended that we do surgery again and had me go see the surgeon at NYU which he had set up for me after our meeting.  During this time, we are also talking to the radiologist up at Mt Sinai, the top doctor at Sloan Kettering who was praised from every doctor we spoke with and a friend who is a doctor including one of the top doctors who treats patients like my Mom at Cleveland Clinic who is a close friends brother. 

The NYU doctors though we should have surgery again, all the friends doctors say don't do surgery, the radiologist up at Mt Sinai says do the surgery again because you might get a few months but they truth is they don't know.  They are doctors.  They save lives.  They didn't know my Mom.  She would not want to live just to live, she wanted to live her life like she always had.  I sat in the surgeons office and sobbed.  They don't tell you what to do, they advise you with a bunch of bullshit statistics. 

We are now talking to a handful of doctors and we go back to the original surgeon.  He does not recommend doing surgery again.  I have him speak to the radiologist at Mt. Sinai.  The radiologist tells me that they don't agree so what is the point but I push the call with the attitude it is ok to agree to disagree and perhaps they will learn something from each other.  It was a good call but in the end, they say it is up to us. 

My Mom has had enough.  She doesn't know the date, the month, the season and can barely communicate although she does know that Obama is the President which we all get a chuckle out of because she has been a huge Democrat forever.  You have to find your moments to laugh. 

In the end we opt to try radiation without surgery.  We will not put her through brain surgery again but perhaps the radiation will give her sometime.  Also, the tumor has come back bigger than it was prior to the first surgery and it has been less than three weeks.  I am not a doctor but that just didn't sound good to me. 

One day of radiation had terrible effects on her.  We are besides ourselves.  We all confer and decide that we need to pull all her medication and just let her go.  It is what she wants.  We know that.  The doctors didn't know her, we did.  Keeping her functioning without the ability to talk, do a crossword, read a book, go to a movie, go out to dinner, to the theater, walk through Madison Square Park…what is the point.  We all realize that, thank god we are all on the same page.  That was a huge. 

Fast forward a few months, I told my gynecologist about what happened to my Mom.  She responds, you did the right thing, a glioblastoma is a death sentence. 

As I look back, I keep thinking it happened so fast.  Every day we had to talk to people and make decisions.  How fast it happened I thought was a sign in itself.  What I learned from this and what I want to share is what I wrote at the beginning of this post, make the right decision for the patient.  My Mom would not have been happy lying on a couch all day with us at her feet.  That wasn't who she was.  We kept her informed every step of the way.  We made sure she kept her dignity by allowing her to leave this world with the full knowledge of what she had, what was happening to her and how we weren't going to put her through treatments that would do nothing but just literally prolong her life. 

We can look back and say perhaps because of Thanksgiving we lost a few days or because we were running around getting opinions, etc. etc. but the bottom line which we were looking for is that she had something that was not curable.  Her ability to communicate in a clear focused manner was never going to return and having to watch that was so incredibly painful for all of us, including her. 

Having her gone is the strangest thing.  I can't fully describe the hole that is there.  I do know that she would have been very proud of us and how her three kids came together through all the medical white noise and made the absolute right decision, to let her go. 

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