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Triumph Over Tragedy: Don't Hesitate When it Comes to Your Health

Something Sarah learned when she was 21 that you are your best advocate.

When I was having thyroid troubles at 21, I learned a very important lesson that has carried me through other health struggles for my family. Today, as I was speaking to a friend, I was reminded of that lesson. Anytime you or someone you love has any kind of health issue, you absolutely must be your own best advocate.

At 21, after learning I needed to have my thyroid biopsied, I was told someone from Kaiser’s head and neck surgery department would call me. So, I waited. By the next day, I was beyond worried and waiting for that call to come. That’s when I decided that I didn’t have to be on someone else’s timetable. Why couldn't I call to schedule this? I called the head and neck department myself and got my own appointment, speeding up the process. From that moment, until I had my thyroid removed, less than two weeks passed. This wasn’t because I was horribly sick or had a terrible type of cancer. Simply, it was because I chose to get that ball rolling!

Five and a half years ago, when we ended up in the emergency room at Kaiser and learned my husband had a tumor, I used my previous knowledge to advocate for Dan’s health. Instead of waiting a week for an MRI, as we were told would happen in ER if he was released, we opted to endure an overnight hospitalization and have the MRI done right away. Once we knew Dan had a tumor, we advocated for his health and for fast removal of the tumor. He was operated on in about a week’s time. 

In fact, the day before his surgery, Dan was scheduled to go to Redwood City, where they were to do an in-depth MRI to map Dan’s brain for surgery the next day. We were called midmorning and told the MRI that was specialized for this brain mapping was down and his surgery was off. What did they mean it was off? We were mentally prepared for this, had lined up child care, and we wanted it OUT! Again, we were proactive. I volunteered to drive us to the only other Northern California Kaiser capable of doing this type of MRI. Thus, we were squeezed in for a 5 p.m. appointment in Sacramento. We endured a rush hour drive and we spent 3 hours in Sacramento, just so we could come home, sleep, and leave for Redwood City and surgery at 5 a.m. the following morning.

Sometimes, being an advocate for yourself or a loved one means listening to others, whether they be people who have experienced similar health issues or health professionals who might know best. Again, speaking from personal experience, we did this as well. After being encouraged in our brain tumor group by other brain tumor survivors, we sought a second opinion at UCSF. Again, we were advocates for Dan’s health—this turned out to be another lifesaver. 

After being told that his tumor had returned by his neuro-oncologist in Redwood City, we journied to UCSF and saw a doctor that was highly recommended by other brain tumor survivors. Dr. Chang was and is an expert in the field of brain tumors. When she looked at the same MRI his regular neuro-oncologist looked at, all Dr. Chang saw was blood that was remaining in the cavity where the tumor had once been. When Dan’s Kaiser doctor was ready to operate on him again within the week, Dr. Chang’s diagnosis was spot on. What Dan was experiencing was normal and nothing to worry about!

One of the best lessons I learned at 21 carries me through today. No matter who your health care provider is—you have to advocate for yourself. Don’t wait for others, even health professionals, to get the ball rolling. Doctors and nurses have hundreds of patients, but there is only one you!

Helen Tomerlin January 08, 2012 at 04:47 PM
I agree 100% with being an advocate for the ill. I was an advocate for my Mom and we had her in our lives for more than a year that would not have happened if not for my advocacy. Just recently my partner had a migraine for 8+ weeks and was getting only "pills" from the Primary, I took her to the ER, pushed for a Neurologist and Gyn. The headache was treated and gone in a week and she is now on a plan with Neuro to help keep the pain level from ever getting that bad a gain. Go Advocates!!
Sherry Rosso January 09, 2012 at 04:45 AM
You are right on - instinct and pushing to get things done is often the only way to get the results you need. A second opinion is very important. I would also say don't hesitate to read up on the condition yourself before you go see a specialist - I think that it is a very good way to ask the right questions, prepare yourself for his/her questions, and help your doctor help you.
Chip Shabazian January 09, 2012 at 06:28 PM
Absolutely. My wife just had a brain tumor removed at UCSF 7 weeks ago today, and I was by her side the entire week as an advocate after doing lots of research, getting multiple opinions, and settling on Dr. McDermott at UCSF as one of the best in the world for the type of tumor everyone thought my wife had. It turned out to be a different type of tumor, but by going to UCSF, we got world class treatment. When she was re-admitted two weeks ago, and I couldn't be with her 24 x 7 because we no longer had family in town to watch the kids, her care went from the best in the world to the worst. I literally had to track down the on-call patients rights admin just to get a doctor to come visit her 24 hours after she was admitted. It's a shame that it has to be this way, but you really do need an advocate. Do it yourself if you can, or have someone with you if you are unable.
Sarah Frank January 10, 2012 at 05:47 PM
My hubby is a brain tumor survivor and sees Dr. Chang at UCSF--your wife is in good hands! Dan's brain tumor was removed 5 1/2 years ago, with no sign of regrowth.

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