Don’t Ever Get Sick: Insurance company woes

I recently received an explanation of benefits form from my insurance company showing that it would not pay my most recent oncology appointment. They did pay for part of the blood tests the oncologist ordered, but they refused to pay for the other blood tests. I am nearly two years out from my pancreatic cancer diagnosis. I have seen the same in-network oncologist all of the way through my treatment. This is just the latest in a long line of refusals as I have gone through this process of cancer diagnosis, treatment and recovery. It is cruel to treat patients the way I and so many others have been treated. Here is a look at some of the highlights from the past year.

In 2013, I switched doctors because my old primary care doctor was completely unresponsive to my complaints. My new doctor was fabulous and ordered some tests to determine why I was having some symptoms which concerned me. As we learned that I had a pancreatic tumor of some kind that needed to be removed, I started researching pancreatic surgeries. I learned that the mortality and morbidity rate for these surgeries continues to be much higher at hospitals that are considered to be low-volume for these procedures. I determined that study after study has recommended that patients have these surgeries only at high volume hospitals. Kaiser has none of the top PC facilities in my network. I found a highly regarded PC surgeon just one hour away. My primary care doctor did a lot of work seeking approval for me to see this noted surgeon, but my insurance company refused to allow me to go. My primary’s office fought this for a while, but the clock was ticking. My GI doctor said the tumor needed to come out ASAP. I did not have time to fight. I gave up and had surgery locally. In essence, Kaiser was willing to allow me to have surgery with no regard to potential outcome and without regard to the clinical evidence that high volume hospitals are safest for patients.

Prior to my surgery, the GI doctor thought the tumor was pre-malignant. When the tumor came out, part of it was found to be adenocarcinoma. I have always wondered if it was cancer all along or did it just become cancerous while we waited and fought with my insurance company?

Following my surgery, Kaiser would not allow me to go out of network to a pancreatic cancer oncology specialist. I received a message from a Kaiser rep telling me that she was not aware of any PC oncology specialists. There ARE PC specialists in this country. There are a couple of PC specialists an hour from my home, but they would not have been covered. When you go to a PC specialty facility, they give patients access to GI doctors, endocrinologists, and dietitians as part of a team treatment plan. Finally, two years after surgery, I have an appointment with an endocrinologist. I am beyond grateful for it, but wish I had not had to wait this long.

I saw and continue to see the same local oncologist. He ordered a PET scan. That was rejected. My oncologist made a referral to another specialist for an issue that has developed following treatment. That was also rejected.

Shortly after getting home from the hospital, as I was in the middle of a flurry of rejections for my pancreatic cancer treatment, I got a letter from kaiser reminding me that I needed a mammogram and a pap smear. While I agree that those tests are important, I resented the fact that my lady parts seemed to be of more importance to my insurance company than my pancreas, which was currently trying to kill me.

My OB/GYN ordered a breast MRI. That was rejected. It was appealed and rejected again.

Following my abdominal surgery, I developed some back issues. The body tends to become weak after being cut straight down the middle. I started seeing  a physical therapist. Even though I have had visits authorized, Kaiser has rejected payment on every single claim. I have called at least 8 times now, and each time I have been told, “We will pay this.” I have documented these calls along with reference numbers each and every time. Within a week, I get another EOB where payment is refused. If they did not want to pay for Physical Therapy, they should have rejected it out of hand, rather than authorize the visits and then refuse payment each and every time.

Yesterday, I got another PT rejection notice. In the same envelope, I got a notice of the refusal to pay my oncologist and for some of the labs. I called Kaiser again. The rep had no idea why the oncology appointment was rejected. She said there was absolutely no reason for it. Then she saw the list of PT rejections and thought that maybe the oncology appointment was rejected because they were just rejecting ALL of my services.

I have been exceedingly polite, but I have lost all patience with my insurance company. The powers that be demonstrated early on in this journey that they had no regard for actual medical science when I requested a surgeon that was out of network. What this comes down to is greed and a total disregard for patients AND for their doctor’s expertise. When you are dealing with an illness where the survival rate is 6%, there is no margin for error. Patients should be granted the leeway to go to specialized facilities. In fairness, the Kaiser representatives have all been polite and they seem to be doing their best to be helpful. I do not know who or how payments and authorizations are determined, but it seems that the new normal is simply to reject EVERYTHING out of hand.

There is a lot more to this story. I have a stack of rejection forms in a binder that I started back when this journey began in 2013. Kaiser was great when I was healthy. They are fine when all you need is a physical and a flu shot. Heaven help anyone who has them for an insurance company if they actually become seriously ill. When will this madness end? This is part of the gift of cancer. Not only do you have to fight for your life. Apparently you are sentenced to a lifetime of fighting for insurance benefits that you have paid for during the all of those years of good health.

Project Purple Denver Marathon & Half Marathon

I started this blog nearly two years ago when I was diagnosed with pancreatic cancer. I went searching the internet for blogs written by other young, athletic PC survivors and was devastated because it seemed that all of the others out there “like me” had passed away. I remember locking myself in the bathroom and crying one day when I found yet one more blog of someone who had passed away too soon from pancreatic cancer. That is when I decided to write about my experience. I wanted to be here, living a good life, healthy and strong, so that when someone else “like me” came along, they would have at least one long-term survivor who could provide some hope. This weekend, I found hope and inspiration in a whole new venue.

I love to run and I love to race. Perhaps even more, I love to help others find their love of running. I spent this weekend in Denver drawing inspiration from an amazing group of runners. Almost a year ago, I became involved with pancreatic cancer charity Project Purple. Since Project Purple is a charity that runs to beat pancreatic cancer, it was a perfect fit. What better way could I bring my two passions of pancreatic cancer advocacy/fundraising and running together? Since I became involved, I fundraised through Project Purple’s Pioneer Program, with the Bryce 100 being my goal race for the year. I directed a 5k race this past April in Colorado Springs. This weekend, I was in Denver for the Rock n Roll marathon and half-marathon with our newest Project Purple team. If you love to run and you want to become inspired, run with a team for a cause. You will find other people who are united by the same passion and who are willing to dig deep to make big things happen.

Dino and I worked at the Expo all day Friday and Saturday. There is nothing I like better than to spend the day with a bunch of runners. I love working race expos and races.I especially loved meeting the people who came by and wanted to tell me stories about how pancreatic cancer has touched their lives. While it is heartbreaking to hear how many people have been impacted, it is a gift to be able to tell others that there are organizations that are committed to helping change the future of pancreatic cancer.

Expo booth set up and ready to go.

Expo booth set up and ready to go.

On Saturday, Marathon Goddess Julie Weiss and equally awesome Project Purple runner Shawn Veronese came by to help at the Expo.

Julie, Dino and Shawn

Julie, Dino and Shawn

We showed Julie’s movie, Spirit of the Marathon 2 at a team event Saturday night and enjoyed some time together relaxing before the big race the next day.

Several of the Project Purple Denver team members at the event.

Several of the Project Purple Denver team members at the event.

When I stood in front of the room Saturday night, it literally took my breath away. I have such a sense of gratitude towards all of our runners. I have been told that by surviving, I provide inspiration for them, but really, it is these people who inspire me. Most of the people on the team have family members who are currently fighting pancreatic cancer or they have lost a loved one to pancreatic cancer. I had several friends who joined us just because they are my friends and they wanted to support my cause. Whatever their reasons for joining, they really provide me with a sense of hope for the future, and not just for pancreatic cancer, but for humanity. These are people who wanted to give of themselves. They wanted to train hard, raise money and run to help others. They want to make the world a better place for other people. It gives me goosebumps just thinking about how amazing they all are.

We had a team of 25 runners who came together from the east coast, the west coast and several places in between. The half-marathoners started out on a wave start at 7:15 am. The marathoners were bussed out to their start. The gun went off for them at 8 am. For the half, we had perfect weather conditions most of the way. The temps were in the 50s and overcast. The course was scenic through downtown Denver. There were a lot of runners running the half and since I spend a lot of time running the trails, I forget how fun it is to run in a crowd in a city. I particularly enjoyed the points on the course which were out-and-backs, as I loved seeing other teammates in their purple singlets. We all high-fived or yelled encouragement to one another out on the course.

I had several people ask me how my race was. The weekend really wasn’t about my race, and part of me wishes I had not even signed up to run so that I could have watched every runner come in to the finish. My recap of the race will be very brief. I liked the half course very much. I am not fully recovered from the Bear Chase Trail race 50 three weeks earlier, but I ran as comfortably as I could, enjoying the crowds, music and sights. I finished 13th in my AG of 463 with a finish time of 1:49:52. Several runners asked me how my race went and I told them, “It was fine” or “It was OK”. After the fact, I thought about it, and hope that it didn’t sound like I was disappointed in any way. Truthfully, I just didn’t care about my race. I cared about THEIR races. I wanted to talk about their experiences.

Larry, Laura, Jaclyn and Diane all finished ahead of me. Sadly, I did not get pictures of Larry or Laura, but I got photos of the rest of the runners. I crossed the finish line and ran into Rene, who got a couple of pictures for me.

At the finish.

At the finish.

With Diane, who finished ahead of me.

With Diane, who finished ahead of me.

Right after the finish, I jogged back to my hotel to check out, and then jogged back to the Project Purple race tent so that I could watch the runners come in. After the two-hour mark for the half-marathon, the clouds burned off and the temperatures started to climb. It would ultimately get brutally warm later in the day.

We had very experienced runners on our team and we had several people who were completing half-marathons and full marathons for the first time. We had some PRs, and we had some people who struggled with the heat and/or the altitude. I was so proud of each and every one of them. I was proud of them for putting in the training prior to the race. I was proud of them for how hard they worked to raise money. I was proud of them for finishing their races. Every person on the team crossed that finish line. I am exceptionally proud of each and every one of our runners, for the speedsters to the ones who had to dig deep in the remaining minutes of the race.

There is a saying, “If you want to change your life, run a marathon.” I would argue that supporting other runners also changes your life. It feels good to run for a cause. It gives purpose to those countless training runs. It also feels so good to celebrate other runners’ successes. I enjoy that as much, if not more, than my own finishes.

One moment stands out for me: I was hugging the members of family who recently lost a loved one and was told, “Thank you for all you are doing. You give us hope.” I cannot explain how much I appreciated those simply and kind words. That is a moment I will never, ever forget. No matter what you do, find something you are passionate about and find a way to give back. Surround yourself by people who inspire you. Make the world a better place for someone else. That is my definition of success in life.

Diane, me, JoAnne

Diane, me, JoAnne

With Jaclyn

With Jaclyn

With Vanessa

With Vanessa

With Faby

With Faby

With Marisa

With Marisa

With my middle school/high school friend, Lynn

With my middle school/high school friend, Lynn

With Julie Weiss and Shawn Veronese

With Julie Weiss and Shawn Veronese

With Matt, who ran a marathon PR!

With Matt, who ran a marathon PR!

Kristina and Eric.

Kristina and Eric.

Boomer & Felicia

Boomer & Felicia

Marshall & Kelley

Marshall & Kelley

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Carolyn and Colleen

Carolyn and Colleen

Paige, Julie & Lisa

Paige, Julie & Lisa

Phil & Kristen

Phil & Kristen

Alisa & Kim Lindsay

Alisa & Kim Lindsay

Kim, finishing her first ever marathon, finishing for Dixie, her mom, who passed away from PC two years ago.

Kim, finishing her first ever marathon, finishing for Dixie, her mom, who passed away from PC two years ago.

Thanks again to all of these fabulous people. I am incredibly grateful to have been a part of this team.

The team has raised almost $25,000. If you would like to make a donation, you may do so at the link below.

https://www.crowdrise.com/fundraise-and-volunteer/the-team/RocknRollDenver

The Rebel Females of Ultramarathons

I was a bit of a rebel growing up. I liked being a girl, but I was not always accepting of societal conventions. I grew up in a fairly small town and I never really felt like I fit in. I wanted to be bold, daring, and did not relish the role of being the good, quiet, compliant female. I wanted to see the world, explore, experience life, warts and all, from an early age. I had a yearning to see what else was out there. I decided to graduate early from high school so I get just get on with my life already. I wrote my college entrance essays about ground-breaking women like Betty Friedan and Gloria Steinem. In my adolescence I learned that girls were still expected to be “nice”, “polite”, “undemanding”. It was important to be a “good girl” in the traditional sense: Pretty and attractive and friendly but somewhat asexual. None of it felt right to me. I had a wild and reckless side to me. I felt like I could not be who I was expected to be.  I often felt badly about myself, because I didn’t know why I couldn’t just conform.

I looked for socially acceptable ways to burn off my energy. While other girls played volleyball or were cheerleaders, I took up weight lifting. While I started off with the little cutesy weights, I ended up eventually benching 155 pounds and squating 200 pounds. I loved it. I felt powerful and strong, and sexy. I was often the only girl in the gym. I worked out with guys who pushed me hard and never told that girls couldn’t lift heavy weights.I had always felt like I had big legs and I hated them. Eventually I realized that I might as well make them really big and strong.

Channeling my inner Madonna with the bleach blonde hair as a young 20 something.

Channeling my inner Madonna with the bleach blonde hair as a young 20 something.

As life went on, I settled down in marriage and parenthood. I was the Military Officer’s Wife who could just not be the proper officer’s wife. I didn’t do teas. I wanted to spend my time at the gym. I started to get the itch again. I had to expand my experiences and try new things. For a variety of reasons, I started running just days after Riley was born. Suddenly, I had a new avenue to express myself and experience life. When we got stationed in Colorado, I felt like I had died and gone to heaven. I discovered trail and ultrarunning and felt rejuvenated. I met Cathy, a complete badass female, who had run may 100 mile races, stage races, done the Eco Challenge, etc., and she opened my eyes to new possibilities. She was the first female ultrarunner I had ever met. I knew there were more out there, but they were a rare species in a sport highly dominated by men. She trained with male running partners because that is all that had been available to her.

It never bothered me that ultras were a male-dominated sport. I like men very much and enjoy their company. However, there is really something unique about being able to see other women doing something that really pushes boundaries in an unconventional setting. Cathy, like me, was different. She has always chosen to live a life that is a little outside of the box. I love that about her. We could run together, tell stories, laugh, spit, swear, stop to pee and feel 100% comfortable. However, Cathy lived far away. our chances to run together were few and far between. Her inspiration stayed with me, though. She showed me that I could do anything I wanted to do.

Over the next few years, I took a break from ultras while my life went through some major changes. My first husband and I split. Steve and I met. We had Peyton. I was caring for two young children instead of one. He works long hours. Running ultras was just not in the equation for me for a while. Then, suddenly, it was. I ran a few 50s, a 100k, a couple of 100 milers. Steve and I continued running together, but I also started meeting other women who ran ultras. I was so happy to meet other ultrarunners who looked like me. Women who wanted to experience big challenges and push themselves. But they are also runners who have similar life experiences simply because we are women. I love my female friends and really enjoy sharing miles and time with them on the trails. There is comfort in that familiarity of experiences.

Nevertheless, ultrarunning is still a sport dominated by men. Women make up a much larger percentage of road runners. In some shorter road races, the number of women now exceeds the number of men. But for ultras, particularly the 100 mile variety, the number of women is still very low.

This opinion piece came out in Irunfar.com recently:

http://www.irunfar.com/2015/10/sugar-and-spice-and-too-nice-for-the-trails.html

In it, the three very well-known and well-respected female ultrarunners talk about why they think we have fewer women competing in ultras. A big theory that they float is that women don’t feel comfortable getting dirty for long periods of time.

In Ellie Greenwood’s earlier post, the 27%, she also wonders why more women don’t compete in ultras.

http://www.irunfar.com/2012/10/twenty-seven-percent-why-arent-more-women-running-ultras.html

I really believe that the fact that we don’t have an equal number of female participants has nothing to do with not wanting to get dirty and everything to do with the demands of working and raising children. Most of the women runners I know can find time to train for a half-marathon or even a marathon. But finding time to commit to longer distances seems impossible. Women tend to feel guilty for pretty much every choice they make in life, but we really feel guilty for taking time away from our kids. We feel like we are not entitled to time to ourselves. We are not being good mothers if we have our own needs and goals in life. I am certainly no different. I waited until my kids were at a sweet spot in their ages, where they could stay home alone but they were not completely over scheduled by their own activities. I only train for a couple of long races per year, but I find time. I make it work because I need to for my own mental health.

With Lisa, who means the world to me.

The other reason why I believe more women are not running ultras is because the thought of being out alone on the trails for a long time seems scary to women. I would argue that being out alone on a trail is far safer than running through many city streets, but I can understand the fear of the unknown: creepy people in the middle of nowhere, animals, getting lost, getting hurt outside of cell phone range. Women have been conditioned their whole lives to be careful, to fear what “could” happen, while men have always been taught to be bold and unafraid.

But this is where ultramarathons hold a great deal of appeal to me. I LIKE the fact that I am in the minority in the sport. It appeals to that rebellious part of my brain. I am a happily married 46-year-old mom who still harbors that bit of a wild child. I love my husband and my kids and I go to bed at 9 pm every night. My life sounds like a snooze fest to most people. But, I do things that other people are afraid too take on. I love the thrill of doing something that most other people perceive as nuts, crazy or risky (for the record, I think running 50s-100s is none of those things). Go ahead though, and call me crazy. I consider it a compliment.

Steve calls this my going to battle look.

Here is part of why ultrarunning appeals to my inner rebel: I get to run around in the woods. I get dirty and sometimes bloody. I get to run with and compete against the boys AND the girls and no one thinks anything of it. I do not have any idea what I look like, nor do I care what I look like when on the trail. Running has nothing to do with my size or shape. It is all about how I feel and perform. I can spit, blow snot, swear, pee, etc., and no one gives it a second’s thought. When you realize that less than 1% of the population has finished a 100 mile race, just entering one feels subversive. When you realize that only about 20% of that 1% is female, well, it feels almost revolutionary.

With Kathy, who finished her first ultramarathon! So proud of her!

I love my female ultrarunning friends. I also love the fact that it feels like we are part of a small, special sacred tribe. We are housewives. We are doctors. We are scientists. We are writers. We are teachers. We are single. We are married. We are partnered. We are moms. We are child-free. We are all expressing that little bit of rebellion within ourselves. We are tackling things that we did not think was possible. We are taking our passions to an extreme. It is exhilarating and thrilling and scary all at the same time. If more women want to join us, we will welcome them with open arms.

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