Archive for September, 2014

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.
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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!