Because the important moments in life just don’t fit in a status update! I started this blog when I was training for my first ½ Ironman, (70.3 miles) to record what I hoped would be growth and progress but ended up being a huge learning experience. Although fitness is one of the key ingredients to a happy life, it certainly isn't the only ingredient. My blog has evolved to document growth, progress and setbacks in other areas too. From my surprise proposal in Rome and wedding in the fall of 2013, to Mom's devastating stage IV cancer diagnosis and death 2 weeks after I found out I was pregnant. Who knows what shape it will take, but thanks for being along for the ride.

Wednesday, June 11, 2014

Service to Others

On one of our first dates, my husband asked me what I thought the purpose of life was. Because women talk up to three times more than men, my answer was more wordy than his. Ummm, to have fun, to leave the world a better place, and to be a Mom.

His response was simple: Service to others.

He wasn't kidding. While other guys I dated would have balked at picking relatives up from the airport, Nathan woke up at midnight and drove through the night to take my Mom to Stanford for a second opinion. They were on the road by 1 am, and arrived shortly after 7 am, a little early for her 8:30 appointment. She also had a 9:30 appointment, and then sees a different specialist tomorrow morning, and before they turn around and head home. 

Originally, I planned to go, but my doctor didn't want me traveling by car that long four days post embryo transfer. Nathan didn't object or hesitate. Actually, when I originally set the appointments, I asked if I should wait until we were out of school. He told me that it was too important, and asked me to schedule the first available for her. 

For those of you new to my blog, Mom has cancer in four or five different areas, including her brain. Awhile ago, we started the lengthy process of obtaining a second option, at the suggestion of Nathan's cousin, who is a doctor. And if you're going to jump through the hoops required to obtain a second opinion, why not go for the very best? She recommended Stanford and even prepared us for the consultation with the following questions (skip over this if, like me, medical lingo is not your thing).

STANFORD CONSULTATION

AIM:
-To assess possible treatments to extend life in hopes of seeing first grandchild
-To have case presented and evaluated at the tumor board
     *Pathology evaluation
           Primary site of cancer is based on clinical impression, not on pathological diagnosis
           Biopsy from initial cerebellar mass:  Metastatic carcinoma, primary site unknown
                 - Concerns: Napsin A not ordered, TTF was negative
                 - No histologic subtype diagnoses and possible inadequate molecular testing performed
                 - Question whether second review of initial slides/paraffin blocks could assist in making a histologic diagnosis, which could help personalize treatment for the cancer better
     *Oncology evaluation
           Currently reached lifetime limit of the carboplatin chemotherapy
           Interested in seeing if there are any clinical treatments or other options available that can help
     *Radiation oncology evaluation
           Responded well to GammaKnife for brain lesions
           Interested in seeing whether cyberknife could be used for lung mass
     *Radiology evaluation
           Clinical suspicion of spinal cord metastases (all spinal taps been negative), would MRI be helpful
           Whether pancreatic and adrenal nodule is metastatic lesions or not
           Are there any new metastases
-Currently have double vision, cause unknown, would like consultation with correct specialist to address if there is any treatment available to lessen the symptom

I will forever be glad that we heeded her advice. Their two meetings today went really well, and Stanford has a difference of opinion on both the cause and treatment of her double vision! This has been the one side effect that affects her quality of life the most because it's so bad, that she has to keep it covered with a patch. It not only affects her ability to see, but also her balance.

The first meeting was with the neuro-oncologist. He is proposing that she stop the chemo that is being administered intra-cranial through the port in her head and instead have the area behind her optic nerve treated with radiation. They believe that if the optic nerve has not been too damaged, it could respond and recover. Also, they think she may not have cancer in her spinal fluid, an exciting prospect. Even UCI has admitted that there is no "proof" cancer cells are floating in the spinal fluid, as both spinal taps have come back inconclusive. Instead, it is a theory based on her clinical symptoms (not being able to see and pain behind the eye).

The oncologist they met with after the neuro knows and respects Mom's oncologist, but does want to find out why she started and then stopped an effective chemo that was only administered once.

Next steps: Mom, Dad, and Nathan meet with another doctor tomorrow morning and then on Friday, her case is going to be brought before a tumor board. Experts in each different area are going to meet and review all of Mom's information and come up with a proposed treatment plan. They will give us a copy of these notes, and also be in communication with her care team at UCI, and coordinate the treatment plan.

Mom is nestled in her bed right now at her hotel in Silicon Valley, tired from the trip through the night and the long day. I really wish I could be there with her, but I know that I we will both sleep soundly tonight, comforted by this new information. Cancer takes hold and shakes you to the core. It takes away so much of your power and your decision-making abilities, but there are still things you can control. Taking charge of her medical care has brought me some peace of mind. What could have weakened my new marriage has only served to strengthen it because he, and his family, have been there every step of the way.

When the brain mass was first detected on a scan in the ER he immediately made plans to fly home the very next day, and his Mom and brother TJ sprung into action, researching better places for her to be transferred to. I never would have even known I could ask for that, and the horrible county hospital in Moreno Valley tried to dissuade us because they didn't want to loose her (she has good insurance). But with Nathan's support, we checked her out, against medical advice, from a place where prisoners, chained, were walking down the hallway and drove her to the emergency room at UCI where she immediately started receiving a higher quality of care.

I could write a blog entry just on that horrible ordeal; what they did to us was criminal. They lied to us and told us the insurance approval at a different facility wouldn't happen in time for her to get the surgery she needed. That if we took her somewhere else, she could die in transport, (they refused to transport, so we drove her ourselves), or, a new place may send her home (with a brain tumor = can you imagine!?) because they had given steroids to reduce swelling. They told us there were no neurosergons at UCI due to a conference in Hawai'i. They even said she may not be scheduled for surgery at a different facility until it was too late.

At UCI, she had the surgery two days earlier than they were planning. Mom believed and trusted all those doctors, and I had to plead with her by saying Mom, its brain surgery...I wouldn't even want stitches here. She relented when her would-be brain surgeon, whom I had never actually met (Dr. Beamer), came in and told her Your daughter doesn't like me because he found out I was pushing to have her transferred. I have totally digressed. Suffice to say that although it has been tough, it has been a good fight, and I have learned so much. In doing this, we have taken some control and regained a tiny bit of what cancer took from us.




2 comments:

  1. If there is one thing I've learned through my hospital experiences it is that you have to advocate for yourself ALL the time. No one else is going to do it. Good for you for being so proactive and knowing what is best for your Mom. And your husband sounds like a real catch. What a good guy. Hope you are resting and feeling good.

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  2. Thank you so much. It makes me wish I had been involved more in her medical care years ago. She went to a doctor regularly...but, little did I know the doctor was incompetent. Even when Mom presented with symptoms from her brain tumor, the doctor told her it was probably just a slow brain bleed and ordered an outpatient MRI. Had she waited, she would have died.

    In any case, I am so thankful to have my husband by my side through this. I knew he was a great guy, but am still continually surprised and impressed. Most recently, he suggested that they move in with us this August.

    Happy you're pregnant, and love following your blog!

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