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. 

Enhanced by Zemanta

Comments (Archived):

  1. Carol Sacks

    This must have been very difficult to write, but I’m grateful that you did. Your story is important and helpful. Thank you.

  2. AnaRC

    That must have been so hard for you. Thank you for opening your heart to your readers. I hope every cell in your body knows that you made the right move and letting her go was the biggest act of love.

    1. Gotham Gal

      yes, the good news, is i really do know we made the right move no matter howdifficult it was for us, it was more difficult for her.

  3. Sharon

    Dear Joanne, I am grateful for this post. I went through a similar nightmare with my father. He died of liver cancer. He was a strong, proud man who planned for everything–“except this.!” He also went very quickly. And it is as you described in an earlier post, like losing a limb. You have only known yourself in the world connected to your mother. I know for me, the loss, coupled with the stress of navigating the impersonal medical system — was overwhelming. it took me a long time to deal with it. I still am. And I am a person who is good at “fixing things”– or doing whatever it takes for someone I love–and then to come face to face with my limits; that this was something I could not fix or make better or ease the pain–and it changed me. Accepting this, I think is a struggle and also part of our humanity. I wish you much strength as you grieve. Sharon

    1. Gotham Gal

      liver cancer is terrible and so god damn quick. so sorry about your dad.i am a fixer too and this was not fixable. interesting enough, my mom mademe the person in her will responsible for her medical decisions. she knewher kids. i couldn’t fix it but i do have an uncanny ability to take a lookat the big picture and do what has to be done, putting all my emotionalthoughts aside. i left the emotional stuff come back to hit me later on.

  4. RichardF

    Thank you for posting this Joanne. It’s pretty close to home for me because my dad has his MRI scan in two weeks as he’s exhibiting similar symptoms. We are hoping it’s part of the ageing process (he’s older than your mum) and that it is not an acute illness.I like the phrase “medical white noise” my dad survived bowel cancer 20 years ago and I remember even now that it was impossible to get a straight answer from a medical professional whilst he was going through it. Must be something they get taught at Med school.Have a great time in Mexico.

    1. Gotham Gal

      reading your first sentence gave me goosebumps. i hope that everything isok.the other thing that i felt the whole way through is how we deal withmedicine in this country as a whole. the amount of money that was pouringinto my mother when she was sick for five weeks, which we will never have topay a dime for, is crazy. there should be a better way.

      1. RichardF

        I don’t know the US system well other than my brother-in-law who lives over there busts his gut to pay for medical insurance for his family.It’s different here in the UK; my father contributed all his working life to the state system so he’s paid his dues are far as I’m concerned. How as a nation we pay for an ageing population going forward is another matter!

        1. Gotham Gal

          that would be the US medical system.

      2. njs

        I was very touched by this deeply personal account of your loss. i have a family member on a downward slope with his health issues and appreciate your insights to navigating the medical system.sometimes the most riveting writing is that which exists somewhere more difficult to penetrate; with this post you certainly provided something your readers will find very significant.separately, my Dr. friend once told me that of the cumulative healthcare costs that an individual incurs during his/her lifetime some approximately 80% occurs during the last 6 months of life. Crazy, huh?

      3. RichardF

        MRI scan results gave relatively good news. Thanks very much for your concern.

        1. Gotham Gal

          I’m sure a huge relief

  5. AlexSF

    That was a very touching and moving post, Joanne. Many thanks for sharing it with us.Last week, I read a similarly emotional blog post about dealing with a mother’s surgery that I think you might get some comfort from.http://houseadvantage.wordp…All the best to you and your family.

  6. daryn

    My wife’s dad passed away from pancreatic cancer when he was in his early 50s – 9 months after being diagnosed.He was an amazing man who, like your mom, always focused on living life to its fullest – whether hiking and cycling or enjoying a steak, cigar, and glass of Scotch. He was the patriarch of the extended family, and it was incredibly hard to deal with seeing his health decline so rapidly.Initially, they tried everything, and we were all hopeful that he’d regain his health even though we all knew what a long shot it was. That was the roughest part. When we all realized that his life might be prolonged slightly, but he was never going to be healthy again, it became easier for everyone to accept that the most important thing was to just minimize pain and let him spend some final quality time with everyone.It was tough knowing he’d never see any of his kids get married, or any of his grandchildren be born, and especially hard for his mother, who outlived her son by nearly 10 years, but we were all able to make peace with the situation, and that made it as good as it possibly could be.

    1. Gotham Gal

      wow. thanks so much for sharing that.these are conversations people rarely get to have. you don’t seek outtalking to people about the heart wrenching decisions and the emotions thatcome with losing someone even though you know that you have to beresponsible and make the right decisions.

  7. denmeade

    thank you so much for sharing your story. talking about our experiences with this stuff (for want of a better word) is really important.

  8. Theodiscus

    I’ve been staring at this post almost all day trying to decide whether to write this or not – it brings back such memories of six years ago when my father, 1000 miles away from his home visiting my brothers, and whom no one knew at the time was not in the best of health, had a heart attack brought on by what we soon found out was septicemia in his body – a severe infection was basically poisoning him to death.I am the eldest daughter of six children spread across a nineteen year difference in age . . . and I’m the person to whom my siblings looked to help us all navigate the incredibly condescending, vague, unclear, vacuous, undignified process that followed.My father had no insurance other than Social Security . . . navigating the do’s an don’ts of that system alone was enough to make my eyes bleed. I’m a pretty smart woman, but I had to enlist the assistance of my mother to help me decipher the crap (my parents divorced years ago). Once his “allotted days” had expired in that system, and without additional insurance, the hospital wouldn’t keep him anymore and they turfed him to this care unit across town where I believe no one has ever come out alive, including my father.To add to that, my father did not do any of his paperwork before hand, so if you haven’t had an explicit conversation with your loved one about their end of life care as you obviously had, you are stuck in the the black hole of “no legal right”.I was told that if I couldn’t find a lucid moment where my father could coherently sign power of attorney over to me in front of two witnesses, then I would have to have him declared legally incompetent so I could manage his affairs for him. He was mostly unconscious as they kept him heavily sedated due to the pain of the infection.Even though we were his next of kin, no one could see his medical charts, discuss long term strategies, or enact a DNR if necessary unless we had the legal documentation. The medical staff suggested against legal incompetence (too grave a step), but were ineffectual to help . . . it was a constant battle.I’m a strong, intelligent woman, but I felt so ineffectual at times . . . everyone around me was speaking the language of “Vague” (required to learn in medical school, I’m sure) and the learning curve was at a 90 degree angle. You have no baseline of reference for what they are expressing to you medically so how do you determine progress or regression . . . and you are trying to learn as quickly as you can while you run 1,000 miles an hour toward what . . . total recovery of your loved one, I suppose.It’s a wrenching, mind-numbing gauntlet, and I feel as though I failed this one . . . I do not believe I was able to provide my father with the dignity he would have wanted . . .I am so sorry for your loss, Gotham Gal, I hope you find your own peace with the process, and thank you for starting the dialogue . . . may it be many, many years in the future before any of us have to go through this again . . .

  9. rachel

    i admire you so much for sharing. thank husband and i just did our health care proxies, etc…you are right, doctors are good (sometimes) at medicine, but your family is the one who has your decisions at heart and it is important to make your feelings known. sending a virtual hug..

    1. Gotham Gal

      thanks rachel. you so want the doctors to tell you but they are in businesstoo (i know scary to say outloud) and most just give you facts….if you askfor them.

  10. Tereza

    I have shivers reminding me of that starting gun and all-hands-on-deck-to-save-mom. The total exhaustion, conflicting advice, the unwinnable fight, the decisions to to what’s right, follow her will and let her go. (similar — stomach cancer…6 months from initial symptom to diagnosis and death)My sibling did not agree with the course of care (she wanted ‘heroic efforts’, mom wanted to go).Thankfully mom was lucid enough to say out loud to the doctors that she’d had enough of this shit. But get this, they made her repeat the words three different times to three different doctors. My mom said to me, ‘how many people do I have to beg to let me die of cancer?’ Dignity in death? Yeah, right.It’s amazing at the number of comments here saying “And i’m a really capable/smart/intelligent person…and yet this was so hard.” I couldn’t agree more. It makes me so mad. It shouldn’t be that hard.In some subsequent lifetime there’s a startup I want to do that makes a game that supports and cheers on caregivers like what you went through, Joanne. The problem — you’re busting your hump emotionally, physically, financially, without clear end in sight (imagine how bad it is for Alzheimers). And then when you’re done, of course it’s not a celebratory finish line for your accomplishments. They’re dead. And you’re sad and lonely and miss them terribly. So something that affirms and acknowledges the million things you do, that wear you to the bone, that says “you’re a good daughter”. Even if it just makes someone’s situation slightly less hellish, that’s an app I’d pay for.

  11. Belbey

    Thank you for sharing this. I experienced the hysteria and torture of healthcare system via a mother and best friend with cancer. The pain and discomfort of surgeries, tests, feeding tubes only ended with the peace and dignity of hospice. Bless the people who run the hospices.

  12. Gail

    I lost my dad 14 years ago from a glioblastoma…I know so well the pain you suffered. In his case, surgery was not an option. We were told the only treatment would be radiation and even that would be only palliative. So we opted for that, but seeing him transported to a different facility every day for the procedure and returning even more exhausted and not knowing where he was or who we were seemed to be futile. When I asked a nurse why this was really being done (the nurses tell you everything), she said “This doctor’s a radiologist and radiologists radiate.” At that point we made the decision to stop putting this proud and elegant man through this torture that he never would have chosen. His time between initial diagnosis and the final day of his life was a little under 3 months. I was grateful that he had no pain, but I miss him still. A daddy is a daddy. And your mom was so lucky she had the three of you loving her to the end. My heart is with you.

    1. Gotham Gal

      the answer from the nurse is exactly the conclusion we came to ourselves.doctors heal. families want their loved ones to return to their formerselves. when it comes to incurable diseases, such as a glioblastoma, ibelieve the medical community should be more honest about the reality asdifficult as it is to hear. let the patient go home. that is the one areathat i could not get over is the thousands of dollars spent from medicare onmy Mom, for what?That is a change that really must be thought about long and hard in themedical world. I am not so sure where the line is drawn but perhapswatching your father go through daily radiation like that would have nevertaken place. you could have taken him home as a family and planneddifferently.

  13. Machlowitz

    Really beautiful and compelling, Joanne.One thought on the residents/interns: sometimes they also are jr. enough to be wrong-I remember one reporting to me on my dying dad, but he was talking about another pt’s scan.But your point is correct-sometimes you get through to someone.The other aspect is experiencing this ( with or without siblings or a parent’s spouse with or without lviing 100 miles away ) combined with sleeplessness, being on alert for phone calls, emotional & physical exhaustion, perhaps trying to keep other parts of life going, tracking docs down-not so easy. I mean really a Tall Order.And the lack of dignity of treatment to which you allude in many a hospital-not to be believed. For instance, lox is weighed in Russ & Daughters with more respect than some patients are weighed in the hospital.I think the feeling that you did for your mother as she wanted is huge. And I hope sustaining. A few weeks before my father’s death I asked him hwo we could hav ehandled his hospitalization differently, what we could do differently, and he said we had been “magnificent.” That statement is a gift I will take to my grave. And you can, too.

  14. CCjudy

    thank you Joanne for sharing something so raw so intimate and moving so many of us. It sucks for something like that to happen to someone just like that suddenly without warning. What about the negative dx in April? I for one didnt have my mother for years as she disappeared into the streets of NYC. What you will always have is that loving relationship unaffected by any dx. Judy

    1. Gotham Gal

      thanks judy. it sucks is the best description.

  15. Jonathan

    A very touching and courageous post. Thank you.Like many of the other posters, I’ve been through this too, having lost both parents within the past 2 ½ years, each to cancer. I was not in a position to influence the decisions very much (my parents divorced and remarried – their respective spouses were in good health and called the shots). There could not have been a greater contrast between the two experiences though. My father, who always was great at simply ignoring things he didn’t like, did the same thing about his health (which had been failing for some time). He denied everything and my stepmother went along. I deferred to her, something that I now regret. So many things left unsaid. My mom’s health deteriorated much faster. She was aware of what was going on and had clear opinions on how the end of her life should play out (no heroic measures). My stepfather, on the other hand, was not willing to accept this and pushed for treatment after treatment. When it was obvious to all that a hospice was the next step, he reacted by insisting, “people only go there to be put down”. I can only imagine how painful it was for him.We, too, heard an endless stream of statistics and could never get the same opinion from two physicians (this was especially difficult with my dad since he had multiple medical conditions and each treatment seemed to exist independently of the other). I know how numbing this process is. In the end, we came to understand that medicine is more art than we give it credit for.

    1. Gotham Gal

      medicine is definitely not an exact art. each doctor looks at everytreatment differently. at a certain age, going through treatment aftertreatment that gives you nothing but agrevation and heartache seems never tobe part of the doctors process. it is the family, like you, that suffersthe most.thanks for sharing this.

  16. artyowza

    my father who is an internist had a hard time letting his sister’s just not in their training.he has has been very vigilant in his paperwork and wishes because he knows how it goes in the endmay i be as clear and brave as you when that time comes

    1. Gotham Gal

      to let someone go you have to think of them, not yourself. that is sodifficult.

  17. kirklove

    Your post captures the whirlwind. The confusion, frustration, helplessness, sadness, it all just swells inside of you. I remember it all too well. The hardest part is doing what the loved one wanted. For selfish reasons you want to hold on. One more day you say.Signing papers to turn off machines, machines that were keeping my wife alive, was gut wrenching yet at the same time peaceful in a way knowing I was doing what she wanted. Luckily we had discussed what she wanted.You did the right thing. You put your mother’s wishes first and honored her life. That is the truest and most selfless form of love you can ever show. Never question that.

    1. Gotham Gal

      i love how you put that. selfless form of love. brings tears to my eyes,truly.

  18. Jackson

    I’m sorry for your loss and you appeared to have made the best possible decisions for your Mom. As a physician, it’s not always easy to make recommendations. The statistics for these things are often well established – but not everyone wants to hear them, people want hope, so it becomes a bit of a balancing act when providing information that is both realistic and open to possibility. But, as you suggested, you and your siblings know your Mom the best – so you take the information provided, conflicting as it may sometimes be, and apply it in a way that makes your family comfortable. What should be available are more end of life counseling services – by someone who is not a physician but with a understanding of oncology, who can look at the information and also spend time getting to know the family, to help them make decisions.

    1. Gotham Gal

      The idea of a life counseling service makes absolute sense.

  19. ellen

    I have made these decisions far too often now. You made the CORRECT decision. My sister has a slow growing non- malignant slow growing brain tumor. Her choice from the beginning is to live to the best of her ability without major intervention. She is still with us but each day becomes a bigger struggle. Glioblastomas grow very quickly and do terrible damage. No one i know has survived one and the process of surgery and radiation and more surgery is a nightmare for family and patient. The most difficult of all is that they are silent until they are big, and have impaired your loved one in terrible ways. Then once you know, you have to act at once. You get no time to really ponder the initial surgery and how damaging that in itself can be. The point is you made all the right moves. The one thing I have always questioned is that if the patient is so sick and radiation is so important and also so damaging why is the patient transported or sent home. After radiation very sick patients do need hospital care but medicare and private insurance will not pay for it. Radiation can cause brain bleeds and other problems in brain tumor patients but you must deal with them alone at home or in a non hospital setting where no one is trained. If hospitals are going to charge so much for their machines they should set aside some of the profits for the patients to get proper care after radiation.

    1. Gotham Gal

      Appreciate you sharing this.

  20. Michael & David

    Thanks Joanne. A lot of good information and clarification. I had been wondering about the MRI she’d had ealier in the year. Never doubted that the three of you made the right decisions. Hope you and your family are well.

  21. Anniez

    My dad died of a gioblastoma. It’s ugly and fast and the journey leaves whiplash in it’s wake. You and your siblings were brave and loving. Your mom left with her dignity. The hole never fills. We adjust to it being there. I hope you find comfort in the future.

    1. Gotham Gal

      Whiplash is the perfect description for the series of events.