Yes, this looks icky

Sometimes I’m asked “How big was the incision?” or “Where was the tumor?” or “Do you have a big scar?” Basically, they want a layman’s understanding of how large the Blob (i.e. tumor) was and, implicitly, was it really all that serious? Was I really in a lot of trouble? Is there something gooey or icky they can tell their friends about?

I confess that I usually don’t know how to answer these questions very well.

So here's some of the findings from the pre-surgery MRI as reported in a memo to my neurosurgeon.

“There is a large extra-axial mass lesion along the left occipital parietal convexity measuring approximately 6.8 x 5.4 x 6.5 cm. There is probable extension of this tumor to involve the superior sagittal sinus posteriorly. Constellation of findings is most consistent with meningioma.”

As best as I understand it, that description means that the mass was in the back, left-hand side of the brain and about 2.7 inches by 2.1 inches by 2.6 inches in size. The doctor also thought that the mass would also involve an important blood vessel running along the top of the brain.

If a guy asked I would say, “Go home and have your wife make a fist. It’s about that large.” If it’s a lady, I’d ask them to make a fist and compare it to a profile of my head, which usually resulted in an impressive “Ohhhhh.” But sometimes I got a confused or “Doubting Thomas” look. You could almost see the gears in their head trying to wrap their mind around the idea of something that large and finding it incredulous. I could almost see them thinking, “Nah, that can’t be true!”

So, to the extent that a picture is worth a thousand words, here’s a picture of the back of my head in the hospital just before I was leaving to go home. Yes, it does look like a zipper. And, as it turned out, a zipper would have saved us all a bit of trouble later on.

If you have an icky or gooey brain tumor picture you’d like to share, email it to me at John@chief-complaint.com.

And, to answer your questions: 1) Yes, I’ve cut my hair much shorter since then, although the radiation has made hair cutting a rather short exercise, and 2) Yes, I was back in the hospital pretty quickly after being discharged.

John

PS - This is an excerpt from Chief Complaint, Brain Tumor published by Sunstone Press. www.chief-complaint.com

Another Celebrity Brain Tumor Victim

Olivia Newton-John has announced on her facebook page that, "My beautiful sister Rona sadly passed on May 24th in Los Angeles. It was May 25th in Australia - which was our mother Irene's birthday. Rona died of a very aggressive brain tumor and mercifully suffered no pain."

See: https://www.facebook.com/olivianewtonjohn

Brain Tumors and U.S.A. Social Security Disability Benefits

This is a guest posting from Molly Clarke who writes for the U.S.A. Social Security Disability Help blog. 

John

Brain Tumors and Social Security Disability Benefits

A brain tumor, like any serious medical condition, can severely impact a person’s life. Because brain tumors vary in size, shape, and location, people with brain tumors can be affected in very different ways. Individuals with benign brain tumors may find that they can continue to live as they always have, with little interference. Unfortunately, more serious or malignant brain tumors can stop people in their tracks and force them to put their lives on hold while they seek medical treatment.

Patients who cannot work due to the effects of a brain tumor may find that the resulting loss of income and lack of medical insurance cause a significant financial burden. If you or a loved one is facing these circumstances, you may qualify for assistance in the form of Social Security Disability (SSD) benefits. The following article will provide you with a general overview of the SSD program and will prepare you to begin the application process.

What is a Disability?

To qualify for SSD benefits, all applicants must first meet the Social Security Administration’s (SSA) definition of disabled. This includes meeting the following criteria:

·         Your condition prevents you from performing the job that you typically do.

·         Your condition prevents you from adjusting to a different job.

·         Your condition has lasted or is expected to last at least one year or result in death.

If you do not meet these basic requirements, you will not be approved for disability benefits. If you do meet these requirements, you will also have to meet additional technical and medical eligibility requirements.

Social Security Disability Technical Eligibility Requirements

The SSA governs two separate programs that offer SSD benefits—SSDI and SSI. As previously mentioned, all applicants must meet certain technical requirements to qualify for disability benefits. These technical requirements will depend on which disability program you apply for.

·         SSDI stands for Social Security Disability Insurance. This program is funded by the FICA taxes that are deducted from most workers’ paychecks. Eligibility for SSDI is based on an applicant’s work history. The SSA assigns “work credits” to each quarter that an individual works and pays taxes. To qualify for SSDI, the SSA requires a certain amount of work credits. Learn more about work credits and qualifying for SSDI, here: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi.

·         SSI stands for Supplemental Security Income. SSI is different from SSDI in that it does not require work credits to qualify. Instead, SSI is a needs-based program, meaning that eligibility is determined by strict financial limitations. SSI is often a good fit for disabled children or adults with little income who do not meet the work credit requirements to qualify for SSDI. Learn more about qualifying for SSI, here: http://www.disability-benefits-help.org/ssi/qualify-for-ssi.

It is important to note that SSI and SSDI are not health insurance programs. After a two year waiting period, SSDI recipients become eligible for Medicare and SSI recipients automatically qualify for Medicaid. In some cases, an applicant may be eligible to receive both SSI and SSDI.

Social Security Administration’s Blue Book

In addition to meeting these technical criteria, applicants must also meet certain medical criteria. To determine the severity of an applicant’s condition, the SSA consults their guidebook of disabling conditions commonly referred to as the blue book.

Although, benign brain tumors are listed under section 11.05 of the blue book, this section states that benign brain tumors are to be evaluated under listings of epilepsy, stroke, or other affected body systems. This is because, depending on their size and location, benign brain tumors can affect each person differently. It is important that you meet with your doctor to discuss how your brain tumor affects you and which blue book listing best covers your impairments.

Malignant brain tumors are evaluated under section 13.13 of the SSA’s blue book. This section states that, in order to qualify for SSD benefits, applicants with malignant brain tumors must meet the following criteria:

·         The brain tumor must be classified as grade II or higher under the World Health Organization classification of tumors of the central nervous system.

·         The tumor is progressive or recurrent even after receiving appropriate treatment.

·         The brain tumor has spread or metastasized to other areas of the body.

The requirements listed above have been summarized from the blue book listing. There are more specific requirements based on the type of tumor you have. These can be found on the SSA’s website.

More serious and life threatening brain tumors may qualify an individual for processing under the Compassionate Allowances (CAL) program. The CAL program allows individuals with particularly severe disabilities to be approved for SSD in as little as ten days. Please note that you do not have to fill out additional paperwork to receive CAL processing. The SSA will evaluate your application and if you qualify, they will expedite your claim accordingly.

Social Security Disability Application Process

It is vital that you go into the application process prepared with the necessary records and documentation. These records include thorough medical documentation of your brain tumor—records of your diagnosis, medical test results, hospitalizations, treatments, and personal notes from your doctor. You should also be prepared to provide records of your work history and financial standing.

Once you decide to begin the application process, you can do so online at the SSA’s website or in person at your local Social Security office.  It is important that you realize how long and stressful the SSD application process may be. In fact, many initial applications are denied. If you yours is denied, do not panic. You have the right to appeal the SSA’s decision.

Remember, SSD benefits exist to help you. It is important to be persistent. Although it may not be easy to get approved, it will be worth the hassle once you can focus on your health rather than your financial distress.

Image credit: <a href='http://www.123rf.com/photo_14055027_social-security-claim-approved-stamp-showing-social-unemployment-benefit-agreed.html'>stuartphoto / 123RF Stock Photo</a>

My First ABTA Fun Run/Walk

The Chicago edition of the American Brain Tumor Association 5k fun run/walk is this Saturday, June 1^st: http://hope.abta.org/site/TR?fr_id=2610&pg=entry 

I love this event. 

In the hope that it’ll convince you to sign up and run, here’s an excerpt from Chief Complaint, Brain Tumor about my first ABTA fun run:

“I was running to get in shape for the American Brain Tumor Association’s five kilometer fun run. I read that the funds were being raised for brain tumor research, so I decided to sign up and give something back to the brain tumor community.

The morning of the fun run, the weather was downright unfriendly: gusty and cold. Nonetheless, my wife and I got our butts out of bed and zipped down town at an unusually early hour for a weekend morning.

The fun run began right next to the Soldier Field football stadium alongside the lake. The whole area felt like an extension of the museum campus which included the Adler Planetarium, the Field Museum and the Shedd Aquarium. Instead of feeling like the epicenter of the city, the venue felt more like a big park.

It was a great place for a fun run.

I ’m not sure what I was expecting for a turnout. If you’d asked me, I might have guessed upwards of a couple of hundred runners and, given the cool temperature and stiff breeze, a few friends and family members.

I was wrong.

Thousands of people were there: friends, families, kids in strollers, kids who should have been in strollers, runners, walkers, folks who needed walkers, survivors, victims, victims in wheel chairs and at least one victim wearing a dorky blue helmet (no, that wasn’t me, I ran without my helmet… and please don’t tell the lady from the infectious disease department).

Everybody seemed to be wearing a motivational shirt of some sort. A lot of people were wearing the official dark purple Pathway to Progress t-shirt, but many were wearing brightly-colored, custom-designed team t-shirts. They had names like “Madeline’s Milers,” “Legs for Lin,” “Go for Joe,” and my favorite team name, “Tommie’s Tumors.”

I had found my “peeps.” I had found a community of folks who, like me, were battling a nasty, unfair and relentless enemy. Unlike me, they were doing so with faith, strength and a touch of panache. I walked around the staging area with a goofy smile on my face. Of course, I also felt that way at Michigan State University football games when everybody wears a Spartan t-shirt, so I guess I’m easily swayed by a crowd.

When the gun went off to start the race, I couldn’t wait to run. There was something fundamentally inspirational about running with this group. So I ran, enjoyed the lake view, shouted encouragement to other runners and had a blast. And in spite of the high-tech timing device that I wore on my wrist, I had no idea what my time was and I didn’t care.

After the race my wife and I hung around oblivious to the cold and windy weather. We looked at the lake, grabbed a cup of nearly hot coffee and enjoyed being part of the crowd. 

As we strolled, we talked about how next year we’d recruit our own team, get our own t-shirt design, get our own team name, and have a group of walkers and runners. Even though we didn’t say it, I knew then we would really, truly be part of the community.”

You can sign up to run @ http://hope.abta.org/site/TR/ABTAEvent/Breakthrough-Chicago?sid=1540&type=fr_informational&pg=informational&fr_id=2610&autologin=true

See www.chief-complaint.com for another excerpt.