Living With Brain Cancer - my playbook

My play book for navigating though a diagnosis of terminal brain cancer

Living with Brain Cancer - my playbook

On March 4^th, 2015, I had brain surgery to remove a brain tumor.   I was diagnosed with GBM. Grade 4 Glioblastoma multiform �" terminal brain cancer. Surprise! The start of a new journey. I am not actually supposed to be here to write this and I am very grateful to be able to do so. If you know me, you know that I don’t always do what I am told. Dying is not on the top of my list of things to do.   Having brain cancer is not on the list either.   Thank you to all of my friends and family for your continued prayers and support.  I know it is the reason I can write this today.  Thank you �" and stop checking the obits �" I continue to live with a renewed appreciation for life.  Perhaps the best gift of all.

I wanted a playbook to navigate this ordeal.  Where are the directions when I am told it is terminal and there is no cure?  I don’t need directions to live, I am actually pretty good at that; but, tell me I am going to die fairly soon then some directions would be good.  This is my playbook.  This is what is working for me.  These are my directions. Perhaps from these you will develop your own playbook if it is ever necessary.

First Play �" Know my options.  Brain Cancer is not an option, I have it.  How I respond to having brain cancer is full of options. It is extremely important to me to know all of my options or choices.   When it feels like I don’t have any choices, I pay closer attention. I have to figure them out if I am going to navigate this journey. Brain cancer, brain surgery, radiation and chemotherapy are overwhelming.   Overwhelmed is not an option that is going to help me.  I have to stay focused and calm.  Many days I do not want to be focused and calm. Some days a tear rolls down my cheek and I think how much more can I take?  Then I remember to be my own best cheerleader. I say to myself just keep going, just keep going, I can do this. 

I was found unconscious on the floor of my office by a member of my staff on the afternoon of March 3^rd, 2015. When I regained consciousness, he started asking me simple questions.  I didn’t know the answers.  I remember his face as he implored me to know the answers. I remember him saying something is wrong. Something is really, really wrong. Get an ambulance.  I did not want to go anywhere in an ambulance and argued with them.   It is the only time my staff did not do as I requested. They called 911 and told me I was going to the hospital.

The paramedics put an oxygen mask on me and took me out through the back of the building to an ambulance.  This was the first time I was ever taken to a hospital in an ambulance. I hope it is the last time.  The sirens are very loud and it is a strange and terrifying experience.  I kept asking myself is this really happening. It is really happening. In an instant, I went from having a very normal day at work to the back of an ambulance with oxygen on my face.

I woke up in a hospital bed and was told I would not be going home. My nightmare is continuing. I was admitted and scheduled for an MRI. It is the standard hospital practice.  The MRI showed a brain tumor on the right front side of my brain.   

Second Play �" Be the decision maker.

I have made tough decisions all of my life. While I don’t always make the correct decision, they are my decisions.  I continue to be the decision maker.   It might be easier to let someone else in a white coat, much smarter than myself, make decisions for me.  After all, I have brain cancer, I can’t be thinking clearly.  Sometimes I don’t want to decide. Sometimes I don’t want to think. Always, I don’t want to have brain cancer.  I don’t always get what I want and I never choose easy. 

My second play is be the decision maker.  These are choices or plays that work for me. Your choices may be different. The first decision I made was to have brain surgery. Many factors were involved in this decision.  I have the best neurosurgeon and this was the most important factor in my decision.  I may have brain cancer, but I am not a stupid woman and I always go with the best.

Less than 12 hours after I arrived by ambulance, I opted to have brain surgery to remove a brain tumor I didn’t know I had. I was not afraid of the surgery. I wanted the tumor out. My surgeon explained he could see the tumor on the MRI.  He had to remove it to analyze if it was cancer. It was the first time the word was said. Cancer.  I signed all the forms and was taken to the operating room.

When I signed the forms, a nurse noticed I signed with my left hand.  She asked my daughters if I am left-handed and I am. The nurse told them to be prepared. The tumor was on the right side of my head and I might lose my memory and the ability to speak.  “Shouldn’t they have said that before they took you away, Mom?”    To the great relief of my family, I was awake and speaking when they brought me back to my room. I told the nurses and anyone that would listen, I am done now and I am going home. I remember saying I don’t have time to be sick. My surgeon gently reminded me I had just had brain surgery and I needed to rest.  He was smiling when he told me.  I remember the smiles on my daughters.  My younger daughter got in the bed, held my hand and told me, “Go to sleep Mom, we’re here”. I went to sleep.  

I don’t remember most of the hospital stay. I know I arrived later in the afternoon on a Tuesday, had brain surgery on Wednesday and was released on Friday. My daughters stayed with me the entire time. They slept in the room and made sure I was taken care of by the staff.  They remember the entire hospital stay and often tell me about it.  Memory loss is an indicator that something is wrong. During the hospital stay, they noticed I was not remembering things. They told the nursing staff.  Apparently knowing who the current president is relieves the nurses of any concerns.  I don’t remember being questioned by the nurse. I am told I remembered who the president is.  It is not comforting at this moment; but, the nurses think I am fine. I still have memory issues.  I would prefer to remember the entire hospital stay and forget the president.  I guess I don’t even have a selective memory.

On March 6^th, I was released from the hospital with a bag of medication that my daughters would make sure I took at the appropriate times.  The tables have turned. I am not taking care of them anymore, they are taking care of me. The reality of this is not easy for me to comprehend.

Steroids and anti-seizure medication were prescribed. It was decided I had a seizure.  They didn’t know if I had a seizure. I could have just fainted.   My post op appointment was scheduled for March 12^th.    I would address the seizure issue then. I didn’t have a seizure, I decided.

I needed to get back to work. I was tired of being out of control and being sick. I wanted normal. I wanted to go back to the time when my biggest problem was losing ten pounds.  I have always worked and getting back to it became my goal. I told my boss I would be back Monday and he quickly informed me that I don’t have brain surgery on Wednesday and come back to work on Monday. Rest another week or more if I wanted.  He had it covered.  Resting sounded like a good idea.  I was tired.  I had staples in my head and I was more than uncomfortable.   I rested and I thought about my post-op visit.  Would it be cancer?  It could not be cancer. That seemed so unlikely.   Before this happened I didn’t even have a doctor.  Cancer is something that happened to other people.

It was a very long week before my post op appointment.  I was reacting badly to the medications that were prescribed and I was thinking too much.  My head throbbed and I wanted the staples out of my head.  I concluded incorrectly that my head would stop throbbing when the staples were removed.

On March 12^th, I went back to the hospital for my post op visit and met with my neurosurgeon. I should have picked up on his serious demeanor. I didn’t.  I was still in denial that this was happening.  He explained that they analyzed the tumor and it is cancer.  He told me I had glioblastoma multiform, grade 4, also known as GBM.  Terminal brain cancer.  My daughter burst into tears and cried loudly. I was in denial and now I was in shock.   My doctor apologized to my daughter for the news. He told us I was in very good hands. We were at the best hospital and there is a complete oncological team that will meet with us.

The oncologist came in and introduced his team. The oncologist explained more about glioblastoma, GBM. He said, if I did nothing, I have at most six months to live.  There is no cure.  Not exactly what I was expecting and not at all anything I was prepared for. Crash course on what I will do when diagnosed with terminal brain cancer. 

The worst part of this entire ordeal is watching my daughters suffer. One daughter said, “When Dad died, I came home and cried to you. When you die Mom, who do I come home to?” I want to say don’t worry I am not going to die; but, I am. 

I know I have raised two very strong independent woman.  I get my strength from my daughters.  I am motivated every day because of them. When my oldest told a family member, “I learned from my mom and dad that you get more with kindness”, it confirmed they are learning more from my example than anything else.  I want to be the best example for them. I want to show them it is easy to be strong when life is simple. Being strong when life gets complicated is more important.

Third play �" Ask questions. This seems like a simple play. It is the most difficult for me because sometimes I do not want to know the answer.  The answers are getting harder to handle.

The standard cancer treatment is radiation and chemotherapy.  There is a trial drug if I want to participate in the trial. Let me summarize my options: do nothing, I have six months at the most. Radiation and chemotherapy will extend my life perhaps two years, usually 20 months. The trial drug will help the radiation and chemo work.  The trial drug will not cure me; but, it will improve the quality of my life.  My life has changed and not for the better if I need quality of life medication.

I always said if I was ever in this situation, I would do nothing. It is definitely easier to say I will do nothing when no one is asking.   Brain cancer happens to other people, not me.

Before cancer, I had an active, healthy lifestyle. I have exercised since the age of 14. I don’t smoke. I paid attention to my diet and only drank occasionally. Cancer is not in my family history. This did not matter and is all irrelevant.  Cancer happened to me and doing nothing is not my only option. I decided to move forward with the treatments.

What do the treatments entail?  They explained, I would follow a very strict schedule. I would take the trial drug at certain times and the chemotherapy at certain times seven days a week. It required fasting. Radiation five days a week for six weeks. No radiation on the weekends to allow my body to rest.  Weekly lab work would be necessary to determine if another cancer was developing as a result of the chemotherapy.  I would also have to take drugs for nausea.

In order to participate in the cancer trial, I had to sign a release.  The release stated I acknowledged that I read about the drug and I knew the side effects.  One of the side effects is death.  I naively thought that was an exaggeration. How could doctors give me something that would kill me?   They can and do in the name of research. They just make sure you sign the waiver.

Fourth play, read everything and know the side effects. Decide the risk/reward. If the type is small get a magnifier. Know what I am taking. I signed the form.  I sometimes make the wrong decision.

I asked if I could work during the treatments and was told yes. The doctor explained extreme fatigue is a side effect and a symptom of brain cancer.   I may need to cut back on my work schedule.  I planned to go back to work that Monday. I scheduled everything around my work day. I would get radiation on my lunch hour.  Chemotherapy every morning and evening along with the trial drug. It worked on paper. I was going to make it work. I factored everything in except being sick.

I wanted to go back to work, because it is necessary. I am not being heroic.  It is a paycheck, life insurance and medical insurance decision. Brain surgery is expensive. Chemotherapy and radiation are expensive. I have a job that pays the bills and provides medical insurance.  I, therefore, needed and wanted to go back to work for those reasons.  There is also comfort in the normalcy of work.   I found myself in a situation that was very different from my usual world and I wanted normalcy.  I wanted to do the things I always did.  I wanted to get dressed, put on a suit, pearls and makeup, drive to the city, and whine about the traffic.     

Radiation, chemotherapy, trial drug and back to work. Three weeks after brain surgery. Did I say I needed a playbook?  Going back to work was a good decision.  My office is close to the hospital and I could make it happen. Of course I had never done this before so executing my plan might not be easy.  I never choose easy.

My first day back to work was a little scary. I had to start radiation and chemotherapy.  My plan was to stick to my usual schedule of leaving early in the morning to beat the traffic.  I dressed in my favorite suit, put on my make up (also known as war paint �" I am fighting a new war �" brain cancer) and, of course, triple strand pearls.  I am acting as if everything is normal and it is helping me cope.  It was important to my family to be a part of the treatments. They wanted to take me to radiation therapy and make sure I was okay.

I have a wonderful man in my life that long ago adopted me as his mom.  He decided when he was young that I would be the perfect Mom for him. He is the perfect son for me.  He has never missed a treatment and more important he has always been there for the all-important Mom-hug. I am truly blessed with a fabulous family.  Each with a unique strength and ability to make me feel I am the luckiest woman in the world. They do that every day.

On that first day back to work my family came at the appointed time to take me to the hospital for radiation therapy.  We went to the hospital together. This was the beginning of a routine that lasted almost two months.   I had my war paint (make up), uniform (favorite suit) and weapon (triple strand pearls) and I was ready. 

We went to the first floor of the hospital radiation center. We were informed of the process, how to check in, watch the monitor and ultimately get radiated.  We were escorted into a room and told the doctor would be in shortly. The doctor came in, introduced himself and looked at me with a questioning face.  He left the room and came back and promptly asked me, “They did tell you? You have brain cancer, didn’t they?”  Yes, I got the memo and was there for the brain surgery, I sarcastically responded.  I am here to start radiation. He left the room and my daughter was very upset. Why did he say that to you, Mom? What if you didn’t know!?  I explained to her that is was the best compliment. He expected to come in and find a crying woman that was recently told she has brain cancer. Instead he found me.  He was confused by my behavior.

The radial oncologist came in and explained I would be fitted with a mask.  The mask is to keep my head secure during the radiation process.  I would need to identify myself every time I came for radiation including providing the type of cancer, the part of my body that has cancer and is to be radiated and my birthday. This is a way for them to make sure they have the correct patient.  It was a reality check for me every day for two months.  I would affirm daily my name, brain cancer, my birthday and get on a table. My head would be bolted down to a table and I would listen to the sounds of radiation to my brain.

Fifth play �" Keep my routines. They are strong coping mechanisms.

It is an unfortunate part of this ordeal that I do not remember things.  I can understand now how terrifying it is for our parents and others that suffer from dementia.  Memory loss is disconcerting and often dismissed with “oh, you are just getting older”. That is okay; but, when experiencing memory loss it is extremely significant and very difficult to accept. I find if I just keep to my routines it helps.  If I am on the road and “forget” where I am going or how to get there, I remind myself, I do this every day, I will be fine. I take the same roads and keep to the same times. 

I continue living and find myself mindful of the days passing, aware that time is running out for me. I chose to discontinue chemotherapy and still am comfortable with my decision. I was on a schedule of 5 days of chemotherapy on and 23 days off and continued to go to the hospital each week for lab work to monitor my condition and reaction to the chemotherapy treatments. On one visit I decided it was time to know my options, ask some questions and make a decision. I asked what the plan was for me and my treatment.  I was told that the standard plan was to continue with chemotherapy for six months or a year, continue with weekly labs (blood work analysis) and MRIs every eight weeks. They planned for me to take the chemotherapy for a year. Duly noted.  I wrote down how I felt every day as a record for myself.  I was not happy with how I was feeling and made myself exercise daily. My thought was to keep fresh blood flowing through my brain and make myself sweat to try and rid my body of toxins. I am not a doctor nor am I trained in any way to make these conclusions �" it is only my instinct telling me to do this.  At the six-month mark, I emailed the doctor and asked what the criteria is for stopping chemotherapy at six months vs. continue for a year.  After checking my MRI, I was told there was no statistical data to say there is a benefit to continuing chemotherapy another six months.  I decided to stop.

I go to the hospital and my brain is scanned every three months.  I am reminded that there is no cure and I have a very aggressive form of brain cancer.  I always ask if anything has changed hoping for a better prognosis.  I get the same answers.  I am very close to deciding this is not beneficial to me.  I already know this information.

Sixth Play �" Happiness is choice �" choose it.

This play is very familiar to me.  It has been my choice for many years.  It is harder to choose to be happy when so much is going on in my head.  I still choose it. I may be slower getting there; but, I do get to happy.  Before brain cancer, I could simply decide to be happy. After the diagnosis, I have to work harder and make more of an effort.  That’s okay. I now schedule things to do to be happier.  I take more trips, schedule outings, and attend events I would have previously skipped.  I surround myself with positive people.

A friend asked if there is ever a time I do not think about “it”.  My response, when I am taking pictures.  My very fabulous and positive friend advised me be bring my camera everywhere and take pictures. I do. Photography is a medicine I will continue to take.  It makes me happy.

I do not spend any time with negative people. I can hit the delete button easily.  I delete negative to keep positive.

Seventh Play �" People will disappoint me and that’s okay. I cannot disappoint me.

Accepting that people disappoint me is sometimes a struggle. In the beginning it was very tough not to judge others and how they behaved.  I have learned that not everyone behaves the same in such stressful circumstances.  I have no control over how others behave.  I do have control over my behavior.  If I disappoint me, that is unacceptable to me.  If others disappoint me I am learning to accept their behavior.

 

I wanted a playbook to navigate through this ordeal as soon as I was diagnosed. I kept saying to myself, I need some directions.  That’s why I call it a playbook. What play do I call for this day? What are my directions for the day?  I thought, there must be an expert on how to keep living every day when I don’t know if it is going to be my last day.  I started writing this playbook in April and here I am almost 15 months later. While the clock keeps ticking, I keep living. I am the expert I was searching for. I keep living, I keep reviewing my plays and using them. A benefit of writing down my own directions is the realization that while my life may have changed 15 months ago, I did not change. My plays are the same ones that I have used all of my life in all situations.  The only difference is I am applying them to specific situations as a result of having brain cancer. Another benefit of writing these plays out is sharing them with others.  I needed a playbook of directions for living with brain cancer and there was no playbook to be found.  There is now a playbook for anyone that searches for it. When I share it, it gives a purpose to this ordeal. If someone can find strength in it or even a bit of humor to get through life with cancer, that would be fabulous.

I have been asked if I fear death. I do not fear death. It is a fact of life. I love life and I live it to the best of my ability.  I enjoy every moment.  I have always enjoyed life.  I do not have a bucket list. 

When I “kick the bucket”, I have no regrets nor should haves, would haves or could haves.  I have never met anyone that can tell me from own their experience what death entails.  I have met many that share their beliefs about death.  I know one thing for sure, I have lived fully and loved fully. If I need it, I have a playbook for death. I wrote it.