Archive for November, 2014

Confessions of attempts at being a normal person living with cancer

November 21, 2014
I wish I could report my days after chemo were filled with clear skies and sunshine. Instead, I was at the ER and been in bed ever since. I do recall this error in judgement of living in denial when I received a gift of pneumonia after a visit to the zoo. Was it the bar mitzvah high coupled with the reality of the cancer job? Was it Alex’s teenage behavior paired with his geometry anxiety? Was it  the reality of my tumor marker rising once again paired with an expert opinion of nothingness? Was it simply bad timing of chemo paired with a lovely virus that won’t  leave my immune comprised body? Whatever it was, it is now the gift that keeps giving. To say my household has been impacted by my demands to be taken by ambulance over the weekend is an understatement. I often wonder how Jim and Alex cope daily as the clouds of fog clear my head.

Here is what I remember. After chemo, I didn’t feel any differently except I thought the headache that often occurs as a side effect seemed to be worse. Since I am not an authority of migraines, I knew something wasn’t right on Saturday night when Alex and I were watching TV.  Sunday was a blur of many drugs taken, but nothing working. I did the unthinkable. I vomited. I have vomit phobia and have never vomited the entire time on chemo for over 4 years. It was a mystery why the drugs weren’t working. My headache was so bad that nothing helped. As I gripped the rim of the toilet, I whispered to call 911. Alex was crying in the background. I heard Jim’s calm voice. I was drugged enough to not know how I was going to get to the ER from my bathroom and I didn’t want to vomit in the car and the 133 seemed too far away from Hoag Irvine. In my mind, a helicopter seemed like a better idea. With a lot of help from my friends along with the calmness of my husband, I appeared in the ER magically. I really thought a helicopter took me. All I know is that I felt like I was some drug addict. The pain was horrific and all I could mumble was, “more please.” Finally, I got some relief along with fluids which I needed from not drinking and too much vomiting. I also had a brain scan to show absolutely nothing. Thank goodness. My poor rock star husband was hearing all the possibilities which all ended with side effects of chemo combined with a virus most likely.
I was happy that my UCLA doc was virtually there with Jim who was planning my next plan of taking a chemo pill to add to the existing combo. I could barely think about that as I was too drugged to think. Once the fog cleared, I was too weak, had a low fever, and had to deal with all the pain med side effects…ie: constipation.
I can honestly say that I have been reminded once again that I am a cancer patient and cannot abuse my body or push my body as I used to. My body does whisper, but then it yells. I am just too stubborn to hear it. So, what is the lesson here? It is flu and cold season. I must avoid crowds, slow down, pick my errands, do some online shopping, and prioritize my moments. What else do I know as the experts pointed out so expertly? The cancer is growing and is complex mostly drug resistant. How to get these cells to stop or slow down is only going to be by a combination treatment? Can I think about tomorrow, December, spring break, summer vacation? It is in the back of my mind, but I am on survival as usual. My goal is to be strong enough to get chemo on Tuesday like usual. My goal is for my boys to smile more, laugh more, cry less, sleep better, and stop the worry. I want them to be happy. I want to get downstairs, get off the sofa, and have them drive me like a dog with my head out the window smelling the ocean air.
What can I say about Thanksgiving? Be truly grateful, for your health. When you have a job like mine, the days of normalcy are not so often. I treasure each good day, each Sunshiney day, even if the sunshine is all about a shower. I am thinking most of you woke up this morning, took a deep breath, and had nothing much to complain about. If that is the case, take your child’s hand even if he/she is 30 and tell them you love them. Listen to music (their music, yes it can be torture), laugh at their stories, and live each moment, now. Stop the hurrying, stop the complaining, and my favorite saying is, it is only stuff. Stuff doesn’t matter, it is the experiences, the memories, the singing, the dancing, the laughing. Stop rushing, stop running, and enjoy your moment, find your moment, and watch the smiles, the eyes full of joy, and know that today is now. Be grateful for today. I am grateful for my boys, my family and all of you. As my fog clears, I will find my sunshine in a shower filled with Philosophy Amazing Grace shower gel and a new pair of clean pajamas.
Advertisements

Those who bring sunshine to the lives of others cannot keep it from themselves. James Barrie

November 12, 2014
I never posted the celebration of Alex’s bar mitzvah. To say it was exactly what I imagined would have been an understatement. What I didn’t picture was all of you surrounding my family with such love and support that the energy was seriously palpable. Just ask anyone who attended. From the beginning countdown with my family and friends helping every step of the way, especially my sister and mom fixing an near disaster at the Temple, I enjoyed every single moment. Despite Alex’s craziness at rehearsal, he led the service, played his trumpet, and spoke so eloquently. I was in tears almost every single day as I was so thrilled to be with everyone celebrating when weeks before it seemed so unlikely. I loved being with each person whether it was hanging out in the hotel room, my house, eating a meal OR two. I cannot tell you how much I have treasured each and every moment. I have never experienced such joy ever. Seeing Alex smile and laugh for days, I knew this image would stay with me forever. Seeing all my family and friends, I knew the video playing in my mind would also stay with me forever.

With my chemo on the 30th, I was in the fog for days, but my mind was filled with images of all the family and friends who made the gigantic effort to celebrate with us. I have never slept so much, but I wanted to stay with my dreams. Until the fog cleared, I was lost in confusion and frustration as written about my insurance drama. Then, I started my road to the clear skies. I have to say that each of you I encountered whether for a moment, snack, or conversation, filled my days with happiness. You can never fully understand how much these moments mean to me. We continually tell Alex how much you need to live for today. This often creates a sense of urgency for things that others find not as important. It also makes him infinitely more aware of those who don’t follow this way of living. His teenage mind has little patience or tolerance for those who think differently. It makes us smile, it makes me laugh, and makes me pull out what little hair I have left!
Now, back to chemo again on tomorrow. These free days never seem to be enough. I cannot explain the combination of urgency and excitement I feel since I have been on the roller coaster ride. Things that other people find routine and boring, I find exciting and energizing. Alex always asks why I talk to everyone everywhere I go. I am so excited to see people since it always seems like it has been too long. Even smiling strangers seem to make the day better. Happy to be here, happy to enjoy the sunshine. While I have been in my “world”,everyone else is experiencing every day life. The more I get to experience the normal, the more I enjoy myself. Yes, this includes trips to the grocery, Target, and Walmart, but I still do not get excited about laundry. I am even getting outside more. As I really am loving my freedom, another bill comes from UCLA, another reminder for tomorrow drug day, and I am back to “my world”. I am not complaining as this allows me to live every day, but it is a reminder again how you must value the little things.  I know as Thanksgiving approaches that more people get caught up in the craziness of gifts, but forget about the giving. I cannot forget the giving as I now have Alex to remind me. Take a moment to think about what you can do for a friend, neighbor, family member, or even yourself. Listen, listen, listen…I cannot emphasize this enough. Friends always hate to tell me about their worries, but I can see it and hear it in their voices. Don’t be afraid to share because I am listening. I am here even if I am dazed, drugged, and confused. I want to help. I want to know even if it makes me cry with you or laugh “at” you. Life goes on every day and I’m just happy to be here to enjoy the sunshine with all of you.  It is my favorite time of year without the snow, and I love those empty beach days where you need only a jacket. I’m off to enjoy the rest of the day before my many hours in the closet tomorrow. Please don’t sweat the small stuff. Think twice before you get angry and take a deep breath. There is a lot of stupidity, frustration, and ignorant people in the world, but it is better to be smart, happy, and enjoying your sunshine. We all have our challenges, but it is how we face them and handle them that makes a difference.

The voice of many and more than living on a prayer

November 4, 2014
This urgent post is a plea to all those patients out there who are exceptional patients. Simply put, I cannot be the only one in the US and world who is an exceptional patient. I’m sure there are others focusing on living and managing their care daily instead of just reacting and waiting for a magic spell by the magicians we call oncologists.

Last week, I went full force back to the cancer job with a conversation with a doc who is going to help me get some “expert” opinions to look at my case. We found one expert at Dana Farber who I have since watched on a web call via a Twitter interactive feed. It is a modern day conference call of sorts which allows for direct live responses with the people hosting the call.  I love this new type of quick response since it allows for worldwide participation. Regardless, my demand was simple. Please don’t have an expert tell me that there are no options and waste my time because I am proof that 2 years later there are many options which worked and kind of worked. I don’t want to hear the statistics. I don’t want to hear I’ve run out of options. This cannot be an expert opinion. This doc agreed and told me how exceptional I am. She explained that oncologists should be looking at how I handle the side effects, how I handle my own care, and how I stay positive. I did mention my short visits to the island of negativity. She even said she was honored taking with me about how I have handled even my ascites wheelchair moments. I appreciated her comments and we ended the call with her hope that she has ideas for me.
Fast forward to yesterday when I had the 4 tiered Insurance conference call with the key into he secret back door of the denial stamper world. Last week,  I asked the case manager assigned to me for the denial stamper Doc’s boss name. Little did I know she would set up a call into the secret insurance world. Unfortunately, I should have had the reminder pep talk from Jim that insurance companies are FOR profit organizations which are in full support of the latest evidence for palliative care vs treatment. This latest and greatest study said that it was better to treat cancer patients palliatively vs chemo since the chemo did not give a patient more time. The increase in life time was due to palliative care. The net effect is to not always continue to treat with toxic drugs. Keeping in mind, this is not a one size fits all, but who am I fooling? In the conference call, I made my announcement of how great the current drug combo was working. This was met with I am the first and only patient to complain about the insurance services provided. I was trying to get over the fact that these denial stamper Docs were calling me a complainer. Complaining is not what I do. I make things happen and look at the facts. So, I dealt with the facts. Yes, I had 35 calls logged to the insurance over a 25 day period which included the insurance calling my internist about a chemo drug she did not prescribe. This also included 8 paracentesis procedures which had a risk of infection and bleeding that could have been avoided. Yes, this also included the black hole my denial went into so that neither Jim nor I could view this ginormous amount of money we owed to UCLA.  As the one and only complainer, I had to mention that the sick cancer patients don’t have time to complain and I am the voice of many to improve a broken process. I am also the voice of the many who have died while waiting for the stamp of approval, unable to file bankruptcy, unable to have a team of supporters or caregivers to fight their fight for their right for the drug which may help. My lists of facts continued to be met with I am “focusing on a magic bullet, living on a prayer, living on hope, focusing on medication which has no proven validity.” So, I guess my loss of 12 lbs of ascites and prior loss of 19lbs of ascites AND my current decline in tumor marker from 1000 something to 535 is just living on a dream?! This is reality, so I had to bark out that they cannot see me (or the dancing I did just over a week ago at Alex’s bar mitzvah), but my bet is that I am in better shape than all of them.
In addition, their mention was that my only real option is a clinical trial and their delightful mention was that I should focus on my end of life planning, hospice, and palliative care. I attempted to remain calm and tried to focus on the remaining facts of what could they actually do for me. Even though their impression was that all my claims were covered, I had to mention the over 4k that was being denied. Of course,this was news to them.  They were very curious about my background and thought I had to be in the medical field prior to diagnosis. Hah! Fooled them! I am a fake doctor. They also told me that I am an exception as I am my own case manager and they have never met anyone like me. At this point, I wasn’t sure whether to take it as a compliment or an insult since it was in between  their recommendation of end of life care. Not quite sure what the mixed message was except for Jim reminding me that they are in a business. My name most likely has over a million dollars of pay outs next to it with possibly a photo and an “x” marking out my face? Okay, maybe not that obvious, but what could be more obvious than end of life, hospice, and palliative care discussion especially when I had told them the current treatment was working. I also thanked them for the 24 protocol they paid for and the excellent care I was getting IN NETWORK at UCLA. There was no connection or discussion made to next steps of new treatment. After I lost one doc after almost an hour, I realized the other doc was still on the call. This was after my rant about how most cancer patients don’t really want to hear the talk about end of life unless either they are seeking that info OR they know the treatment is not working. This is really not a recommended discussion after a patient is telling them that a drug treatment is working. I still find it hard to believe that there aren’t any other exceptions to the rules. I mean ovarian cancer patients are women and women are moms, sisters, grandmas, friends and women don’t give up and women don’t wave the white flag even when odds are stacked against them. I can’t be the only one. Yes, I manage my side effects, manage my care, have a wonderful support team which extends to medical professionals. Yes, I’m surrounded by love. Here is what I have to say to all insurance people, I am the voice of many. I refuse to believe that I’m the only exception. I’m just the only one now who is “complaining” and refusing to accept the word “no”. I have always been about process improvements even before I had cancer. So, fix this broken process, stop making cancer patients stress and suffer. Cancer treatment is not a one size fits all. We are individuals with unique needs and unique bodies and motivations for staying alive. Yes, cancer is a business and a big business, but why not be in the business of keeping people alive.  I don’t want to be the exception, but want to be the norm where everyone receives standard of care and is able to manage the side effects, have an excellent quality of life AND live with cancer. I prefer living without cancer, but we have to do what we have to do. Are the processes broken? You be the judge. Well, why was my tumor marker blood test after 4 plus years being denied along with a metabolic panel blood test which is critical to every cancer patient? Am I on America’s most wanted cancer patient otherwise known as the Complainer? I still am picturing my name blown up in the insurance office with a giant comment in red pen saying, “stop the money pay outs and start her on palliative care.” So, I am living on hope, thinking I’m on a magic bullet, and living on a prayer. I guess there is nothing wrong with that as long as my treatment doesn’t cost any money. As I always say, too bad, so sad. I am going to continue my focus on living. Yes, in the back of my mind is all the reality and truth. It makes me do things now instead of tomorrow. I will stay in the now, find my sunshine, and enjoy every single moment. I will always be the voice of many and continue just living in hopes that the denial stamp will come with some thought for the next patient. Hoping they will think of me less as the complainer and more of the exception making a difference for all cancer patients. I refuse to lose my voice. I refuse to give up, ever. This call was not only a dose of reality, but when asked specifically what the denial stamper needs, I did get answers. I now have names and multiple numbers which will lead to less calls on my side. Less calls equals more time to do the things I want like walking in the sunshine. Find your voice, find your sunshine.