The pharmacy coverage game or how to get drugs covered off label!

December 9, 2014
When you are like me, beyond NCCN guidelines, I’m in this grey area where drugs that I need are not the first choice for the average oncologist. All of you know I have the wizard of wizards when it comes to oncologists. The wizard paired with my rock star husband come up with all sorts of potions to try. As predicted and expected, the tumor marker is rising. The goal again is to stay ahead of the progression. After my strange virus and slew of side effects, I started the daily chemo pill after Thanksgiving. I used to have a break even for a day of complete clarity, but now cloudiness continues daily among the new side effects. With my last chemo, the trace of protein in the urine coupled with the high blood pressure not only caused a decrease in dose by half, but has now caused me to be a 90 year old unable to exit the house before a routine blood pressure is taken among other issues. My days of exiting has become less plus I fear the germs of the season. While I remain house bubble bound, we have a new addition to the entertainment factor which is Amazon Fire TV. I’m not fully trained, but it seems fun. I should title a blog post how Amazon kept a Cancer patient sane! The addition of this pill is only taken once a day, but original dose is 3 times a day. Yikes. I can barely manage once. Tis the holiday season, but I find no records of last years cards, gifts bought etc…because that was a fog pain phase. It is often a blur of ailments, symptoms, side effects. Unknown at times whether it is the cancer or side effects and I must think back, look at my notes and get a perspective.

It is the current pharmacy game which takes a turn for a “where’s Waldo? ” type of adventure. For the past four plus years, I’ve always had to use a specialty pharmacy for expensive drugs. We begin the new game of off label drug treatment. So for 2 weeks, the paper trail nightmare starts and numerous calls are made. I get names, numbers, dates, and the mystery continues. I think this is their secret game. If you don’t call or push things along, you lose this game and possibly your life if you are like so many others who are too sick or rely on the system of paper pushers. In the meantime, I get a bill from UCLA for a surgery that didn’t happen. Even though, this was the one wheeled in and out before anything happened. Recall the Fellow who was loving the idea of surgery. Of course, the number of charges were excessive. I get a balance forward with no details and demand the details if only to delay payment and am told I’m the first to ask this ever. Yes, again because people are too sick to question, too tired to do battle. Spend time with family or friends or battle insurance and bills?!
The paper pushers seem to be winning this game and one day I was told it was in the process. Then, surprising news that now it is being moved to another specialty pharmacy since instead of a drug benefit it is considered a medical benefit. I call the new specialty pharmacy only to be told that they have nothing even though the one I just talked to said they sent things via fax. At this point, my option is to either start the process all again losing 2 weeks of time OR be the go-between with these specialty pharmacies. I choose path two after rolling the dice hoping for lucky number 7. Now, I’m given the wrong number for the new specialty pharmacy and the old specialty pharmacy says it is really up to the pharmacist dept when they want to fax the script. HUH? I’m thrilled to know this info and wondering how many wave the white flag at this point. I call again the first specialty pharmacy using words like rapid resolution, supervisor, manager, expert or anything that would translate to urgency for these paper pushers. I’m now told that the fax will be sent to the new specialty pharmacy. One more call to the new pharmacy and confirm that I have all the right numbers and they tell me that once received, this will start the paper pusher process. Do I think it will be done my Weds? I doubt it.  I will continue to take this daily chemo pill, get the chemo combo pending my urine results on Weds and continue the pharmacy game. The game continues today when I call only to be told that even though it was escalated and the first pharmacy did fax the script to the new pharmacy, it is now in the black hole. Why you ask? Oh, no one knows why. Now, it will be escalated again. Not sure what is different about this escalation vs the old escalation. I’m now convinced it is a marketing ploy to pacify a patient. Okay paper pushers, “use the word escalate, so the patient feels as if we are doing something, but we are going to delay until the patient either pays out of pocket or gives up.” Yes, it is a scary thought, but seems a bit too real.
While my days are more cloudy, I ask you to find your sunshine during this crazy season. I also recommend making the most of your time. If you enjoy putting up decorations, do it. If not, skip it and do something else your family would enjoy together. If you love baking, do it. If you are at a loss for time, use slice and bake. It is about the experience and “kind of” the taste! If you really can’t get your act together for sending a card, don’t stress, don’t do it. Either do a New Year’s card or skip it. All these minutes can add up to less stress, more time with your family. Honestly, it is the simple things.  Prioritize what is important and show your kids what should be important. It’s really not about the “stuff”. Take a drive, look at the lights, get a hot chocolate and laugh a lot. Today is what is important. Ask your kid to tell you what gift you bought them for the last 3 years. Unless it was something near and dear, I bet they will remember last year’s seeing a show, movie, or other fun family experience together. If there is one thing I am constantly reminded about besides the value of having good health, the stuff really doesn’t matter. There are so many who have so little. I encourage you like Alex encourages me to take a day during this December and give to others. Giving can be as simple as letting someone cut the line, smiling at a cashier, or thanking someone like your kid’s teacher. Find your sunshine!

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.

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.

Follow the yellow brick road, only I cannot feel my feet!

October 15, 2014

I think it is a cruel joke that these chemo drugs play on patients. Once the fog begins to clear and the high from the steroids wears off, you think you are on the path to see the wizard for the magic is about to happen. Then, all of a sudden the palms of your hands are bright red and you have a strange sensation in your feet. For me, I was so happy to be able to breathe that I just ignored it. I started my practice of walking down the hill from my house to the elementary school. This walk I took for granted all the years prior to having cancer. I can see Alex and I among my neighbors walking down the hill. Such great memories and who knew I would be going in slow motion down the hill. On my exit, I did see friend who honked and waved in excitement. They couldn’t believe their eyes and I couldn’t believe mine either as I creepy crawled down the hill. My goal was to make it down the hill and back up.  It is 2.4 miles round trip. The up factor never was easy even when I did it every single day with Alex in elementary school. Of course, this included times when I had to walk way behind him. I was proud to be walking, breathing, and moving without the weight of 12lbs of malignant fluid burdening my body and mind. I almost skipped down the hill. I did ignore the shooting pains in my feet because I first explained it by the reason that I had not really moved for months and walking down and up hill was hard on the feet. Then, my detective husband noticed my movement was slowing down and I could not even keep up at a snails pace. Again, I ignored the obvious signs and symptoms of hand and foot syndrome. I finally did the google search on the chemo drug and listed in bold was the 70% hand and foot syndrome ONE WEEK or more after the dose of chemo. WHAT? So glad to be learning this NOW. Lucky for me, I made it through Greece, Croatia, Turkey, and Italy with this and had potions and lotions for this ailment. I started my day with putting numbing cream on the feet. Yes, this is NOT what it’s purpose is, but I have to continue my exercise plan before tomorrow’s chemo. With bounce in my step and the clouds disappearing to the glorious sunshine and perfect 70 degree weather, I floated down the hill not feeling my feet at all. It is a strange sensation especially since I had to tell myself that my feet were there. Once it started wearing off, I soaked my feet, more lotions and potions to begin my day.

Don’t think my cancer job is over. It continues with more claims not being paid by insurance along with the big interpretation of the results of all the samples taken back in August. It seems that my sample doesn’t follow the average ovarian cancer patient because why would it? The reports provide conflicting messages that the drug that I am currently on will work, but eventually these cells would be resistant or would they? These are all reports at the cutting edge of cancer treatment which tries to create a picture as to what drugs will and will not work on the cells. Of course, this may be fine in the lab, but a real person is another thing. All interesting info, but you have to try to not get too caught up in the “story”. Lucky, we have researchers on my team who have been there for me since the beginning because I am outside the bar chart of ovarian cancer patients and mostly because they really care. Much time was spent discussing this and many ideas, some of the same were discussed. The next plan must start moving ahead because this is the game I play along with my rock star husband who is always 5 steps ahead and really understands all the cytology and language of these cancer cells gone wild. Gotta a love a man who can understand that!

Tomorrow is my visit to start the drug combo again and countdown to Alex’s bar mitzvah continues. I cannot explain how happy I am that I am getting chemo this week instead of next week. Yes, that may sound strange, but I plan on being fully present for the event. Looking forward to enjoying every second. Until then, the fog may enter, but the sunshine is just around the corner. Find your sunshine-hey, eat some candy corn, apples, or anything Halloween. You are never to old for a pumpkin patch! If you live around here, go to Tanaka and pick yourself some fresh carrots and a pumpkin from their patch. Make your kids go even if they are whining and wish they were with “their friends”. Take some photos and compare them to old ones. Just enjoy the moment…

Trials and tribulations!

October 8, 2014
As the lizard Cancer baby disapates, I am once again forced into this Cancer planning job. I’ve been in multiple trials and everything varies depending on the pharmaceutical company from reimbursements to exceptions. When I was in the vaccine trial, the pharm company was definitely more flexible or was it due to the study coordinators pushing issues on my behalf. I’ll never know. Today I was greeted with the results of the numerous blood tests I had on Thursday at UCLA. The reality is this: the immunotherapy was starting to work. My tumor marker declined and another marker called LD (lactose dehydrogenase) which is the tumor marker for those who don’t have gyno Cancer also declined. Why I should believe anything otherwise when I have over 4 years of data to support that this marker directly corresponds to the disease progression or regression? So, now because an exception was not made in the trial for me especially after Jim’s 8 persuasive emails, my face to face, I was forced out of the trial. The implications are grandiose of this lack of effort by study coordinator or pharm company. I cannot enter any immune trials again until FDA approves drug. My chance is gone for allowing my body to kill the Cancer without killing it with chemo. Now this is again another frustrating place to be especially when I am reminded that either the chemo will kill me or the Cancer according to the docs. All we can do going forward is use the existing contacts we have and pursue this with insurance for off label use of the drug. Another scary experiment in dealing with insurance and multiple things out of our control. So, I must move to the positive of what has happened since I was kicked out of the trial.

We were informed on  Wednesday night that the insurance approved the drug. This was all due to Jim’s escalation with his work, Cisco. I realize how lucky I am to have Jim who fights for me every single day, and that he works at a place where they believe based on facts that I should get the treatment I deserve. What I am told later at UCLA does not surprise me. There are many who are not so lucky. What happens to these people that cannot afford the treatment, are too sick to escalate their right to the drugs, or who have insurance that stamp denied without any thought…they die. This is the horrible reality. So, all these statistics that we are presented about Cancer must be put into perspective because how many of those patients didn’t have the same chance as I have. Because the situation had turned for me with fluid growing rapidly and even Paracentesis unable to do much to eliminate the burden, I phoned my mom to come to be with me. I was back to the invalid state on pain meds unable to drive, move, eat, etc…the breathing became difficult and honestly very annoying for me since I knew that drug combo would work.
Even though I was upgraded at UCLA to my own room with my favorite nurse, the UCLA bureaucracy once again caused huge delay in the treatment. It took 2 hours to actually get the drug due to a click of the button not being done or something as simple as that. So, with the traffic and infusion time, it was a delightful 12 hour day! My mom went with me and came up with the brilliant idea for the driver who takes us to LAX to drive us. I was so uncomfortable that my moaning and groaning would not make for ideal driving on the 405. Then, the next day was another outpatient procedure. Total of outpatient surgeries that could have been prevented due to insurance approval was 3. Recovery from those surgeries that could have been prevented was 3. All time and effort, plus pain and suffering from the procedures which could have been prevented by a stamp of approval for a drug I got on 8/6 is immeasurable. They removed 3 more pounds of fluid. Grand total of fluid removed 12 pounds. On Saturday, I woke up to losing 2lbs more and the drug began to work. How do you end this adventure? Go to the Temple, followed by Nordstrom shopping with Brixton who needs his own blog, and a great dinner in Laguna Beach at the Lumberyard.
Now I’m on the count down to the bar mitzvah. I am so thankful that I am starting to feel better and so happy about feeling better. I cannot explain it!  Please find your sunshine in every day! You will be happy you did! Don’t get caught up in the race even though you may be the driver, taking your kids place to place. Turn on the radio, blast their favorite song, watch them smile OR better yet ask them a question and really listen to their answer. My next request is to say, “thank you”! I mean thank the cashier, gardener, your friend, your family, your parents, your child. One word can go a long way. I thank Jim every day for never giving up on me, the system, and the treatments. Without his efforts every day, who knows where I would be? He is my biggest fan and I love him for that! Please remind your kids both old and young that it is important to say thank you. Honestly, I can count on my one hand, Alex’s friends who thank me for even the smallest things! Two words can go a really long way!
For more info about cost of cancer drugs-check out:

Hagop Kantarjian: High cancer drug prices are harming patients because either you come up with the money, or you die.

http://www.cbsnews.com/news/the-cost-of-cancer-drugs/

Insurance issues are the worst side effect of having cancer!

September 28, 2014
You wouldn’t believe the story if I told you. Honestly, I told the idiots at our insurance that the worst part of having a terminal illness isn’t that or the side effects of chemo, but having to deal with them and their new constant “denial” of drugs that work for me. Now, this is not even mentioning the huge burden it puts on an oncologist who has hundreds of patients he is trying to help. UCLA sent a 27 page document with 3 case studies why I should be getting the drug I need. Instead, they came back with denied and called UCLA for more info, but didn’t tell them what info they needed. ONE week passed by and nothing was done except a real idiot who called my internist to tell her the claim for chemo was denied. I guess reading is a skill that is not required for denying insurance claims. My internist can’t even order chemo and lucky she is so fabulous and her office staff so meticulous that they phoned me with this info. Besides all this, it used to be that claims that were having “issues” we were able to see online, but now they are hidden in a black hole to force a patient to either file bankruptcy to pay for the ginormous cost of treatment (can be over $100K monthly, yes it is true for newer drugs so pharm companies can make up the cost for all their trials) or just give up and die. You know me! There is no giving up here. So even though Jim took time out of his day to have a conference call last week with idiot #2 at the insurance who assured us she would escalate and find out what the status AND move things along, NOTHING was done.  We had another call on Friday (of course at the crack of dawn because no one in insurance works on the west coast, so again just more struggles for west coast cancer patients)  to find out absolutely nothing. I can now add up the hours I have spent on this project to about 2 days. Two valuable days lost on trying to get a drug which has multiple case studies that it would work and I know it works because I had it on 8/6!  I called again Friday only to finally be escalated to Paul the supervisor. I have zero confidence in Paul. I also have zero confidence in the medical “doctors” reviewing my oncologist’s 27 page fax of evidence to support the use of the drug for me. I really believe that their doctors are veterinarians and definitely not oncologists and definitely not gynecological oncologists. They are determining my care, my future treatment, and are able to easily stamp my life away to “denied”?  This is the sad reality for all patients who have any type of illness. It is one giant game where the many paper pushers involved have no care, concern, or decency as they are probably just thrilled to have a job and hate their jobs. I always like to shake them with the reality and ask them how should I explain to my 13 year old that his mom can’t get a drug which will eliminate the malignant fluid which continues to grow because the insurance company’s strategy is for his mom to give up?

All this insurance side effect game was just one more frustration added to the equally frustrating week. I learned on Monday that my oncologist was in Europe when I got my Weds treatment. How did I learn about this? By an email triggered from UCLA changing my appointment to another oncologist whom I met once? Being treated at UCLA for over 4 years, I’ve met the many many oncologists there with all different expertise beyond gyno, but why do I get one I’ve only met for 5 seconds. This week was a bit different since Jim who always takes me for treatment was away for work. I had my friend, Elina take me. If I didn’t have her there no one would have believed my story that this oncologist saw me for less than a minute. I am not even kidding. Elina had the list of questions we needed answered and lucky we prepared on the drive up, because we had no idea that we would be chasing the doc down the hall asking for answers. In the time, Elina pulled out the paper from her purse, the doc was gone. This is to give you an idea of how fast it was. We both shook our heads in disbelief. I wondered if she was going to charge my insurance $800 for the visit (could all this be part of the problem of this system) and was she just this way with me OR all my oncologist’s patients. This seems unacceptable for any oncology practice. Even when in the factory of trials at UCLA this summer, I don’t think I was dismissed so quickly. Yes, my symptoms were ignored since they had different goals of drug toxicity, but here I thought it was different. Again, my nurses have my back. I had visits from many of them reminding me that the drug that I need the insurance to pay for did work for me. Just want to mention that it is the principal of the thing with this insurance game as Jim reminds me he would spend every last cent getting me well because it is only money and I am his world as he is mine.
This all leads to the development of the lizard baby, cancer baby, or plain ole’ I can’t touch my toes inflation of the belly. As usual, this developed day by day until the tipping point where my body cannot process this malignant fluid if there isn’t a drug to get rid of it. This causes a whole host of problems.  Now being an expert in avoiding a major crisis, I booked myself at Hoag Irvine for the draining party. Of course, not only did we have an insurance call that morning, but I went to the Renaissance to meet the gal who is helping me with the centerpieces for the bar mitzvah. Crazy? Yes, of course I am. Jim knew better than to ask me anything except if I could drive. Having zero pain meds, I was good to go wearing my absolute comfy clothes without looking like I woke up and was wearing my pajamas. I went with the idea of that I don’t know about tomorrow, so I just had to do it. Jim and Alex attempted to support my craziness with their concerned smiles. After that fun sunshine of seeing these amazing centerpieces exactly how I could dream of how they should look, I was ready to drug up, pain free, to face the drain. I do love the IR Doc who has the process down to second by second, play by play, pain by pain, announcements every step of the way. I like knowing what is happening and felt more at ease this way versus the UCLA IR Nurse idea of “stop asking too many questions, no one  asks this many questions.” After the 3 lbs lighter, I could breathe much easier. The unfortunate thing was that it came back the next day.
Again, much avoidance of the river of denial, I am forced to face the music and send multiple emails to UCLA and my doc while he is most likely on a plane from Europe to the US. Jim is armed with his next steps of evidence. Alex is cheering me on. I have to admit that I hate feeling like this when I know the drug is available to make me dance on the tables once again. Okay, maybe dance on the floor. So, while I feel the breeze through the windows and smell a hint of the ocean, I see my sunshine, but am grasping at the rays beyond the clouds. Alex plays his concert for me and I feel my sunshine once again. In the meantime, I will drug up and take a nap. Please find your sunshine today, appreciate every moment because today is now and tomorrow is yet to come.

Sailing down the River of Denial until…

September 21, 2014
It is easy to continue your journey down the river of Denial, but soon reality hits. As I post every single day the symptoms of ovarian cancer on facebook, twitter, and instagram, I cannot ignore my own checklist in my head. Of course, I choose to shove that to the back of my mind and carry on with the joy of living in the moment, driving around Aliso Viejo, shopping, and making every attempt to be normal.

When you have lived in the chemo fog, pain med fog, and flashes of memories of wheelchair, brushing my teeth in bed, unable to dress myself, crying on the phone to my oncologist you really want to stay floating down that river of denial. Instead, Alex’s big birthday was approaching and bar mitzvah plans carried on. While making every attempt to gather photos for Alex’s video montage, I was almost in tears about how different I look. Old photos of friends and family kept me smiling and forced me to stop my journey on the river of denial. So, I bet you are thinking I just gather my thoughts and compose an email to my doctor. Nope, I meltdown and sob like I haven’t sobbed for such a long time. Fear, anxiety, anger, and frustration filled my every thought. All I could say was words that my boys didn’t want to hear. Jim’s mouth hung open in disbelief and his quiet voice spoke volumes not only with loving encouraging words, but facts about multiple treatment options. I heard Alex running into our room. His new teen self (he said he felt different) told me to be positive as he held my hand. He repeated that I could do this since I have done it before. Both my boys reminded me in their loving calm voices that the fact is that the immunotherapy isn’t supposed to work for 8 weeks which is not until Oct 8.  I barely heard anything they were saying. I kept crying. Then, as usual I was woken up by their voices and their cheerleader words. I know I can do this. I am not where I was. I have to be vigilant in monitoring all my symptoms. Listen to my own advice that I give other cancer patients in being my own advocate and making my voice heard. The next morning, I went to Hoag Irvine (my home away from home) to get my brain scan results and follow up on my “draining” order. Brain is “normal” and procedure order is valid until 2016.
So, I will continue to stay in the present moment and not worry about tomorrow or the next day. What I did today was have lunch with Jim in Laguna Beach, took a long walk on the beach, and took some deep breaths of delicious cool ocean air. I remind you again to cherish every day. On a side note, allow the crazies to go in front of you in the car line at school even if they cut you off, listen to the music in your car, smile and feel sorry for them because that one second that they had to get in front of you must have been important to them!  When they start waving their hands to want you to run over the middle school student on the side walk, then you draw the line. Continue to listen to your music and wonder what is going on in their lives that they want you to run over a student! Seriously, kindness people! Remind your children to be kind to others even if they are “mean”, “crazy”, or “weird.” A tiny bit of kindness goes a long way. When you are at the grocery and the cashier barely looks up and looks like either they have a headache or hate their jobs, try a little kindness. Now that I’m sailing down the river of reality, I am more present and reminded of how important today is. Hope you find your sunshine because we are really having some amazing weather in So Cal!

Beer and immunotherapy, a good combo?

September 15, 2014
Either because I can taste hops in the beer or just the memory of drinking beer in Belgium, I had to have a beer this weekend. My ever calculating mind won’t stop since we are now on countdown to Alex’s bar mitzvah. Just typing the word, I start to tear up. I read his speech and his thoughts are amazing, thoughtful, and insightful. I don’t know how I will get through the day without crying. His appreciation of how hard I work to live is something he gained from Camp Kesem.  This drug takes 8 weeks to work and I am dancing, praying, hoping that when his bar mitzvah day arrives that there is no crisis. Yes, I am a believer of thinking about today, but when you’ve experienced all I have, tomorrow is in the back of my mind.

This past week I was interviewed by an agency representing a pharmaceutical company. I am the perfect candidate. Now on my 24th regimen, diagnosed as stage IV and I am enjoying a quality of life that is unknown to many ovarian cancer patients. Forced to review each drug, the side effects, the years of treatment, and the feelings along with each recurrence, it was an exercise in facing the whole picture, the reality. I am betting this was for the PARP drug, but they don’t tell you. You are not allowed to use your name or tell where you are treated. It was a valuable experience and my interviewer informed me that a team would be listening in and the interview would be recorded. I had to mention about women all over the US and world who don’t receive the same drugs, opportunities, due to financial problems or insurance battles. I explained that ovarian is mostly a mom disease. These are moms with children of ages ranging from months to full grown adults. I used to be the young one, but I find that I am the old one now. There are too many young women diagnosed. There are also too many women not living due to this crazy cancer and it’s horrible statistics. When I stated the drugs year by year, I could think of friends, my cousin, my neighbor, gone from cancer too soon.  I think the question about, “talk about a typical day in your life” was a shock again to the reality that I face daily. The cancer job to stay alive is ridiculous. I had to explain a most recent week. This past week included scheduling a brain scan, an attempt to get chemo appointments, follow up with insurance disputing $20k for a drug I already got, follow up on UCLA samples never sent since July, and facing aches and pains from side effects. There is much more to the cancer job. The job of being a mom, wife, sister, daughter, cousin, and friend. Life goes on and friends face every day challenges that I love hearing about…yes, this is the every day frustration that life brings real life problems.  Mostly, I love what most of you may not think about. I love taking Alex to school or picking him up, making dinner for my family, talking about the day. You see when on immunotherapy the fog is gone, so I can be fully present and really hear what my boys are saying. Again, when feeling this clear, I tend to run like I have never run. I do everything I can and plan moments sooner rather than later.
One moment was having our Cantor come over with her guitar and Alex with trumpet discussing, playing, listening, and choosing the music for Alex’s bar mitzvah. I would pick in my head the song I liked and Alex would always pick differently from me. The only song/prayer was the healing prayer song that Alex said it was my song and I should pick the melody. I told him it was up to him. Hearing the melodies, guitar sound along with Alex trumpet tunes, I had flashes of memory and felt an overwhelming sense of joy and emotion. Alex explained that his emotions are expressed in his music. Watching him play the piano while he moves his body to the music, I smile when I see and hear his passion.
With bar mitzvah planning, there are a full set of list of items to do along with the cancer job and mom job etc…lucky for me is that Jim and Alex are very involved and extremely supportive especially when I freak out that the candy for the candy buffet is being delivered during the hottest week of the year or that I can’t remember Hebrew any more or even basic English! What is my biggest surprise is the RSVP process. I loved the parent who told me and thanked me for giving her family and children a teachable moment in manners and party etiquette. Yes, RSVP equals respondez Vous s’il Vous plait. Bottom line, please respond. I love when people tell me “write them down”, I’m wondering if the good ole’ RSVP is now replaced with evite, email, and text. Does this mean that when our kids get married, they will simply send a blast text? Now, even for my wedding, we had a website of all the info. All I can say is that the RSVP has become our one funny moment each day. Not sure why people find it so difficult to send the card to me already stamped. Don’t get me wrong, I know there is planning involved, but my chemo brain is just becoming un fogged, so the “write the down” RSVP is a bit challenging. This leads me to the entire world of manners. I love a child/teen who thanks me or asks how I am feeling even asking if I feel better yet. Bravo parents, you are still teaching. Unfortunately, I hear the way some kids talk to their parents, teachers, or waiters etc…huh? My parents always taught me to treat everyone the way you want to be treated. Do people just not care? I have had doors slammed in my face while having arms full of bags. I have had people act beyond rude…forget kindness. Now, I am talking about adults. Yes, these are adults teaching their kids or not teaching their kids. Take a moment to remind your child to say thanks, treat people with kindness, understand good manners when at a party such as thanking a host/hostess, wishing the person happy birthday etc…they can be reminded of this lesson no matter the age. They will eventually have jobs and despite the technology, kindness and thankfulness goes a long way.
This reminds me of the interview Alex and I had this week about Brickshare. I realized I was guilty as the people I talk about when it comes to thinking outside our little circumference of Aliso Viejo. Within these walls, there are homeless students, students and families who struggle financially. Just a short drive away as Alex reminds me, there are thousands of families who struggle not only with homelessness, but with survival for every day basic necessities. He reminded me of the gangs where kids can’t walk down the street and Kidworks provides a safe place after school. These places are minutes from our home. With all our crazy schedules of sports, music, school, homework, church/synagogue, friends, I am asking you to pick one day in the next 3 months to say, “Thanks.” This request means that you should take your kids to one of the 6 places Alex partners with for Brickshare or a non profit of your choice. A great opportunity is coming on 10/18 to make Brickbots at South County Outreach from 9-12. Alex tells me that he is working with DJAMS but we have no one signed up. We only need 20 kids and 5 adults. If you live somewhere else or that date doesn’t work, visit your local food bank. Go shopping and buy a bag of groceries for the food bank. Better yet,have your kid contribute their allowance or tell them they have to use a budget of $5 and see what they can buy. Alex keeps me on my toes reminding me that Project Hope Alliance, Families Forward, and South County Outreach need some lunch items or even breakfast items. They won’t get donations until Thanksgiving and some have empty shelves from the summer.
Please take the time to explain good manners to your kids, show them how grateful they should be, teach them a value of one dollar, and explain the RSVP process. In the meantime, what can you do today besides find your sunshine and stay cool? Thank the cashier, thank the server, be patient in the heat, show some kindness and compassion, you will be happy you did. As always, think positive, stay positive, and laugh a lot even at the crazy drivers or what about the mentally challenged Von’s grocery bagger who told me that “I’m gonna get cancer and die.” Not sure what that is about, but it was maybe due to my wig wearing or was it the fun fetti icing? Got to laugh, but I will not be shopping at Von’s for a while!

Joanie Miracle Triestman

September 7, 2014
With ovarian cancer awareness all September, my goal is to tweet, Facebook, Instagram as much info about Ovarian every day. I always hear my doc’s voice saying if there was more awareness, then there would be more funding, more investment in the future of ovarian cancer patients by pharmaceutical companies instead of removing ovarian cancer from trials since it is such a bad statistic. How can we improve the statistics if we don’t improve treatment options? It is great that Stand Up 2 Cancer announced the ovarian cancer dream team. My doc must have known about this before as he mentioned it to me at a visit long ago. He has a passion for research and innovative treatment. Just look at my list of 23 chemo protocol combos. The immunotherapy trial is my 24th. I have given this list to anyone on any message board who was told by their doctor after 2 chemo regimen to go to hospice. These are mothers, grandmothers, sisters, friends, and cousins who were told there were no more options. They have not lost hope and have the strength to fight, but are told to basically give up. None of my UCLA team has ever given up on me even through allergic reactions, 19lbs of malignant fluid, rising tumor marker etc…the team always finds options as I’m always willing to fight.

Our trip to Maui was the best ever. I know I probably have said that about our cruise or other trips, but we needed this trip the most. There was no watching of any TV and there were no games. We only had each other to talk laugh, and express our joys and fears. Since Camp Kesem, Alex has found his voice for clearly expressing his thoughts. He has grown so much this summer with all his camp experience and with his Brickshare project. He has learned about people and gained valuable life lessons. He has had disappointment, frustration, fear, and pure joy and happiness. There has been a lot of “why?”, but more of discovery of who he is, who he wants to be, and who he wants to share his time with. He knows how valuable time is and how good days for everyone are something that we cherish. He knows I cannot tell him about the future, but I can tell him that I am always willing to do whatever I can to stay alive.
Every step I took including the 5 miles I walked every day with Jim were magical. Alex agreed that Maui is magical. We had such adventures and enjoyed every minute. When we ate at La Provence it was as if we were in France instead of Maui listening to Alex try his French phrases. When we ate at the Monkeypod, I could actually taste the food! When Alex and I walked together, we watched a nesting bird, listened to his music, and talked about a trip to Europe. Every day was amazing. I loved being with my boys and they reminded me how just few weeks before I was in a wheelchair not moving and now I walked 5 miles!
The unfortunate reality was that the very next day we came home, we had to go to UCLA. With the new trial, tests needed to be done and blood taken to measure the drug. Plus, I got to see my doc. I am still treated like a rock star at UCLA. Since I had to have a zillion teeny tiny vials of blood taken which will be sent to some mystery lab, my nurses insisted in doing every vial verification with name and date of birth only to correct me by saying, ” Joanie Miracle Triestman.” They put me in a private room and I was escorted away from the cancer faces. Strange, without seeing those faces, the automatic nausea that I get,never happened. The best part about this visit was seeing my doc. The nurses were so excited to see his reaction. He came into the room with a new Fellow. I barely make an effort these days to remember the names since by the time I learn the name there is a new one  in his place.  He smiled and reached forward to hold my hand and hug me, both of which is a demonstration of his excitement. I flashed my belly to him and he responded with, “I see” and “I’m excited” said with a smile, but with cautious optimism. I get it. Been here, done that over and over again. For me, I felt that I was given a new chance and did feel like the miracle the nurses were calling me.  From the inability to walk to walking 5 miles, I feel better than I ever had. With the missing of the usual fog caused by over 4 years of chemo, I can think clearly these days which makes me energized beyond what any one is used to. I feel almost like my old self. Could it be the DuoLingo ap woke up my French brain and this cleared out some webs of fog from chemo or the new immunotherapy which is supposed to cause a slew of side effects, but not chemo brain?  Whatever it is, I will cease the moment.
When you have moments of feeling good knowing what was, you tend to go a bit crazy enjoying every moment. My boys especially Jim fully understand it. So, if I am focused on doing a photo album, making lists, shopping at Target, they don’t question about why I’m doing so much, but smile and say, “love you.” Why does something have to be done today? Because today is now and now is what I know and enjoy. I must live like this always. Positive energy,thoughts, activities, people, are what motivate me and give me even more energy. Jim understands and cheers me on every day. Alex now stops himself with his teen complaints only to turn them into positive statements. I have no time for negative and emotional vampires. I know you all know this. Get on my positive train for living in the moment, enjoying each day, and finding your sunshine. As my doc says, I have a cancer card pass. My card does not entitle me to be belligerent, but it does allow me to take the time to fast pass ahead of the vampires and negativity. It may be difficult to understand why I do what I do and say what I say, but honestly I don’t have the time to explain. I think you know that I’m seizing the day and finding sunshine.
I found my sunshine moment in hearing Alex play his trumpet in a jazz jam session. My only peak was seeing his butt wiggle to the music and his head nodding to the beat. The sounds were amazing and my heart was full of joy as his music warmed my soul.
For over the past four plus years, I’ve met women online and held their hands. I listen to their concerns, get them off the island of negativity, give them lists of drugs to take to their docs, give them hope, and try to convince them that after 2 lines of treatment that hospice is not the answer because there is always something to try. This summer was a sad one for me. Today, I lost another cancer buddy who seemed to have the strength that I did. She experienced the fluid like I did, but her doc tried a different chemo which for me was never helpful and my doc understood this drug to not be a good single agent. She has a son who is 12 and she is gone today. Her body was tired and that chemo was not good. Another mom gone to ovarian cancer. It saddens me, frustrates me, and motivates me more to enjoy today, kiss Alex, hug my hubby, and be thankful of being alive. Our kids may make us crazy at times, but today just smile, hug them, and listen to their stories, hear their jokes, and try to understand their stress which is unlike what we dealt with. Breathe deep, stay calm, avoid the vampires, and laugh a lot!

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