My Journey
Living with a Brain Tumor

Chapter 2

Second Opinions

I decided to see my regular doctor, who was new, since my other doctor had left the clinic which I attended. I was having some digestive problems. He said he thought it was due to stress from what I was dealing with. I ended up in tears and asking him if he had time to listen to my story. He said yes and I began to pour out my symptoms and attempts to figure things out with specialists for the last two years.

I explained that the neurologist thought I had a rare condition called migraine infarction which is a stroke caused by birth control pills. I explained my distrust with the doctor because he was not open to giving me information about any other diagnosis, such as if it was a tumor.

My doctor sat there and did what I had needed the most, listened. He told me I needed to get a second opinion. He said that it is normal to get a second opinion. He said with something such as this a second opinion is important. He said what I needed to hear. I had been concerned about offending the neurologist. How silly! I am thankful that my doctor listened and gave me this advice.

Trust

I had begun to really lose trust with the neurologist and the clinic when I went to have a second MRI and the first MRI was not there when it was time to compare them. A mixup had happened and they had not been sent from the hospital where I had them to the clinic where I had the second ones. Even though a month had gone by they were not sent. I was very upset because this visit had such meaning for me. I was hoping to confirm that this was a stroke or a tumor. The neurologist was a very soft spoken and kind man.His nurse was a gem, always willing to answer your questions.

Later, it was the hesitation to talk about the what ifs that made me have doubts. I needed information! I needed to prepare myself for all the possibilities. I was having trouble waiting for another month for a conclusive diagnosis. I asked if I could meet with a neurosurgeon to get information about what might be the next step if it was a tumor. The words needle biopsy had come up briefly and I wanted to understand the procedure.

I was referred to a local neurosurgeon and a consultation appointment was made for 3 weeks later. Because I had an HMO insurance at the time the appointment had to be preapproved. This became a nightmare for me because of the communication breakdowns and energy that I had to spend getting approvals for different specialists. I learned only by happenstance that there was a local person who dealt with these type of preauthorizations. This information came after countless phone calls to my insurance company. I also was limited in my choices of physicians and hospitals. I was told I could not go to Seattle but would have to go to Spokane for any second opinions. This was very upsetting as we had heard about excellent people in Seattle. Lucky for me Spokane had excellent people too.

The day before the consultation appointment with the neurosurgeon I received a call from his office to say that the appointment would have to be rescheduled due to emergency surgery. I explained that since I had made this appointment 3 weeks earlier, I had also made an appointment to get a second opinion with a neurosurgeon in Spokane for the following week.. I was then told that this neurosurgeon does not give second opinions. I said "What?" and it was explained that the doctor was so busy that he only liked to meet with patients if it was probable that he would be doing the surgery.I tried to explain that technically he was the first opinion but because of the rescheduling he would be second. I felt like I was doing the old Abbot and Costello routine of Who's on first? As the receptionist became more confused I said just cancel my appointment. I thought to myself, " I don't really want to see this man anyway. Not if my best interest and the best treatment for me is not the goal. What if the best treatment was not local? Could I count on this doctor to tell me this? The priority should be what is best for the patient.

In the end it was best that I had canceled the appointment. The neurosurgeon I saw in Spokane was caring, answered all my questions and the technical biopsy procedure that I ended up having was not available locally. I'm not sure the first neurosurgeon would have given me that information.

When I went to meet the new neurologist in Spokane for a second opinion it was to be at the end of a camping vacation for my husband and I. I asked my local neurologist what was the best way to get the MRI's to Spokane and he said to deliver them myself. In the end we paid to have some sent by UPS and then carried the rest on a Canadian vacation. This experience made me realize that if something is very important to you, the best way to get it somewhere is to deliver it yourself!

Knowing

When I met with the new neurologist there was an immediate feeling of trust. I was expecting him to confirm the opinion of the first doctor that the abnormality was a stroke but he surprised me. Instead he said he felt I had a tumor. He was very up front and clear with his reasons why. I felt such a sense of relief. Finally someone that wasn't afraid to tell me the worst, what I already expected.

I had been told by the first doctor that if it was a tumor it was definitely operable and would most likely cause some visual damage, but just in one eye. The new neurologist and neurosurgeon felt that was not the case. They said that because of where the tumor was and the type that they suspected it was, it was not a good candidate for surgery. Quality of life becomes an issue. It was also explained that when there is damage to one part of the vision area of your brain it could affect sight in both eyes, and also visual memory could be affected. In other words I might not recognize symbols or be able to read. This was not good news considering I am a reading teacher.

The neurologist explained that the initial diagnosis of a possible stroke was not a bad one. Until time and MRI"s could show that it was a tumor, it was the diagnosis that he too might have concluded.

After the tumor was confirmed by these two doctors, I met with the former neurologist and he was in agreement with them. I asked him why he had not been so open about sharing information about it maybe being a tumor? Was it because two months had to pass with two MRI's to be sure of what we were dealing with and he didn't want to worry me? "Yes" he replied. I am glad I got a second opinion and I am glad I persisted for information. It helped me understand and accept the tumor diagnosis later.

When the diagnosis confirmed my intuition and validated my feelings I felt relief. At the same time I felt fear. "Oh my god! It's true!" I remember walking outside and needing to sit down. I felt dizzy. I felt like I was in a dream. I telephoned my local doctor from a pay phone and his nurse got on the phone to say he was with a patient This was the doctor that had said I should get the second opinion..She asked me lots of questions in an irritated tone. I felt myself about to burst into tears. I said it was very personal and that I needed to talk with him. A few minutes later he was on the phone. Sometimes you have to be very strong about what you need.

The Neurosurgeon

When we met the neurosurgeon for the first time we had to wait for awhile in the waiting room. I was given papers to fill out ( I recommend you make a copy of one of the forms to carry with you so the information about health and family history can be recalled easily.) and as I was filling them out I began to feel dizzy. I began to feel like the entire summer had been for this day. Three months had passed and now I was here to talk about the stereotactic needle biopsy. The biopsy was needed to determine the type and grade of tumor. I could not remember any information and my husband filled the papers out for me.

We were led back to an office by a young man and it took me a minute to realize this young man was the doctor! He looked so young! He sat behind a very large desk and we talked and looked at the MRI's. (I am getting pretty good at looking at pictures of my brain as if they're not mine.) He spent two hours talking with us and when the office staff went home he stayed. He made us feel at ease and that he cared. He was very knowledgeable and explained things very clearly.

At one point he made it very clear that surgery to remove the tumor was not an option. I was very upset and tried not to show it. Up until this point I had visualized the solution as surgery. I felt myself tuning out due to emotion. I couldn't focus on the words, instead I felt as if I was floating away. My husband listened very intently and was able to answer all my questions later when we tried to remember everything. (It is very good to have someone with you to remember information. I have even used a small tape player so that family can hear the conversation later.)

I felt like I was in a scene from a movie. I remember him saying "This is a lot to digest" and to go home and think about it. Not to feel that my situation was hopeless. Together we planned a date for the biopsy. He would do it on a Friday even though he didn't usually schedule surgeries then. He wanted to do the biopsy as soon as he could. We left feeling very confident and full of trust for this man.

Sandy's Patient's Bill of Rights

1. I have the right to be informed-use the internet, ask doctors, read books, talk to others. Keep a list of questions to ask each doctor. Make them tell you the What ifs.

2. I have the right to be listened to--make someone hear you--even if you have to cry or send them a letter with all your concerns and symptoms.

3 I have the right to request tests--don't let Insurance companies pressure doctors. Even expensive tests like MRI's are needed and a patient should be able to insist on one.

4. I have the right to compassion and kindness from health care professionals--They are healers.

5. I have the right to ask for information and consider alternative/supplemental medical treatments.

6. I have the right to a second opinion.

7. I have the right to an insurance company that trusts my ability to decide when I need to see a specialist.

 

Acceptance

I have accepted this and realize that I cannot change it. I can't control it but I can make decisions and affect my own attitude and feelings towards it.

Even though I 've accepted this, it doesn't mean I stop living. I set goals. Simple goals like keeping a journal or getting well enough to attend my son's football game. I also make financial plans to help with any problems in the future. This relieves me and lets me concentrate on the battle ahead.

I also feel a need to accept the unknown. I believe I will make it through this biopsy and yet I need to write some postcards to my family. This lets me say what I want to and reassures me that I can let go of that worry. I put the postcards in a special box knowing they will be read someday.

Book List

Here is a list of books that have helped me throughout this journey
If you have some to add please E-mail me.

Making Miracles Happen - Gregory White Smith - Pulitzer prize winning author writes about his brain tumor diagnosis of 3 months to live... and that was 15 years ago! Good info on how to find the best doctors and treatments.

Brain Tumors - Leaving the Garden of Eden - Paul Zeltzer - A survival guide to diagnosis, learning the basics, getting organized and finding your medical team

The Blue Pearls Elizabeth Stuart Warfel -- beautifully illustrated children's book

Cancer Survivor's Nutrition and Health Guide Gene Spiller and Bonnie Bruce

The Immune System Cure Lorna Vanderhaeghe and Patrick Bouic

It's Not About the Bike (My Journey Back to Life) Lance Armstrong

Every Minute Counts Lance Armstrong

Because Cowards Get Cancer Too (A Hypochondriac Confronts His Nemesis) John Diamond

Love, Medicine and Miracles Bernie S. Seigal M.D.

The Measure of our Days: A Spiritual Exploration of Illness Jerome Groopman, M.D

It's Always Something Gilda Radner

Tuesdays With Morrie Mitch Albom

Spontaneous Healing Andrew Weil

Cancer... There's Hope Richard and Annette Bloch *

Fighting Cancer Richard and Annette Bloch *

Guide for Cancer Supporters Richard and Annette Bloch * These 3 books available free to cancer patients. Call 1-800-4-CANCER or printed from their website: www.blochcancer.org/

Creative Visualization by Shakti Gawain

Life is a Rollercoaster Mary Lowe

You Can't Afford the Luxury of a Negative Thought John- Roger and Peter McWilliams

God Said HA! Julia Sweeney also a video and a CD, see below and Chapter 6

When You Can't Come Back Dave and Jan Dravecky

Gift From The Sea Anne Morrow Lindbergh

 

VIDEO:

God Said HA! (one woman comedy performance by Julia Sweeney. A hilarious, true and touching account of this former Saturday Night Live performer's experience when her parents come to live with her while she cares for her brother who is battling lymphoma. During this time she discovers that she too has cancer. A very healing performance to watch because you will laugh through the whole thing. She also happens to be a local -- having been raised in Spokane.) TWO THUMBS UP, WAY UP!

 

Inspirational Quotations

The cure for anything is salt water... sweat, tears, or the sea
Isak Dineson

Out of intense complexities, intense simplicities emerge.
Winston Churchill

I have good days and I have great days!
Lance Armstrong

Every challenge holds a gift in its hand.
unknown

Write on your heart that every day is the best day in the year.
R.W. Emerson

Faith is permitting ourselves to be seized by the things we do not see.
Martin Luther

Learning to trust, no matter what life turns out to be, is a great discovery.

Satisfaction comes from giving up wishing we were doing something else-or being somewhere else.

There is a spirit guiding us, in ways we often don't understand and don't need to understand.
Sue Bender, Plain and Simple Journal

Preparing for Surgery

I had three weeks before the needle biopsy. It would be a stereotactic needle biopsy. I would travel to Spokane to have this surgery. My husband and I had done research and found that this type of biopsy is very accurate, site specific, and computer guided. It is not available locally where I live.

During the time that I had to prepare, I worked and tried to concentrate but it was very difficult. I tried to focus on getting strong for the surgery and took vitamins, some natural supplements from the health food store that were supposed to boost the immune system, and practiced visualization.

I talked with a minister and friend and tried to prepare myself both physically and mentally. Because I did these things and had some time to prepare for the procedure, I had a sense of peace and readiness for the procedure after all the waiting.

Surgery

When I first thought of the details of the biopsy I was very scared. Thinking about a hole being put in my skull and brain tissue being pulled out a needle was very frightening.

I spent an afternoon talking with a minister that I consider a friend and have lots of respect for. We sat outside and he listened to my worries about dying. He told me to try to trust god. Not to ask or expect for each step to be the way you imagine, but to trust in god that it will ultimately be okay.

I decided I couldn't change what was about to happen so I might as well enjoy meeting all the nice people and try to make them feel good. I made a conscious choice to do this. It also helped me to think of being brave for my husband, parents and son.

With this sense of peace the rest was easy. I had a great dinner the night before the surgery, had a glass of wine to help me sleep, and actually slept through the night. We had to be at the hospital by 5:30am. My husband was able to stay with me until right before the surgery. I was introduced to all the operating staff and even laughed and joked with them.

The first memory I have after surgery was waking up shaking and feeling very cold. A man asked if I was cold and then put a warm air-filled blanket over me. He said this was a common reaction to anesthesia wearing off. I asked if I had gone to surgery yet and he said that everything had gone well. I felt such relief!

I stayed two nights in the hospital and met many incredible nurses and hospital staff. My recovery was better than expected and I know that much of this had to do with my attitude. I had some pain with a collapsed I.V. but was so happy to be forming thoughts and talking that I didn't mind.

The biopsy confirmed that I had a malignant astrocytoma grade 2 tumor.

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