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!

Who Wins Wheel of Fortune Cancer Edition?

August 26, 2014
Yesterday, as we pulled in the driveway of UCLA, I started getting the associated nausea that often happens with cancer patients. I took meds of course because there is nothing worse than being nauseous before you get any drugs. When I walked in with all the treats, I was treated like a rock star once again and called the miracle girl. I must say I did play the game of recognize the famous celebrity in the elevator who happened to exit the elevator on the same floor. This was an actor in the show Extant with Halle Berry and also in Wolverine and Lost (Darma initiative leader). He was trying to be in disguise with hat, unshaven, and sunglasses which he had to take off since he couldn’t see. The elevator was full. I have great facial recognition (name maybe not) and he knew that I knew, so he just smiled. He did not go to oncology so I really had no scoop. With my new miracle girl celebrity status, I was welcomed by another favorite nurse. Yes, all UCLA nurses are my favorites. He is one of the nurses you want if you are in a clinical trial. His attention to details is meticulous. My blood counts were good except for the red, so this explained my ghost look as Alex calls it. I didn’t mention the hand and foot syndrome that I conviently had now. I didn’t want anything to prevent me from getting in this trial. My nurse tells me this drug has hardly any side effects and has been effective in melanoma. It is immunotherapy so it works by activating your own T cells to kill the cancer. Unfortunately, it takes 8 weeks to start working, but I won’t let any fluid grow to the point I was before, plus I honestly have my team of Westwood nurses and staff who have my back. Each one verified and double checked every step of the way with this new trial. Each 15 minutes, my vital signs were monitored, plus PK (measuring drug in blood) plus urine, plus EKG, plus other blood. I was encouraged to drink a lot.
Then, the doctor evaluation needed to happen, but the doc was in the other building. I decided to go alone with the study coordinator.  Who knew I would have entered the “Who wins the Wheel of Fortune of cancer?” Meaning  who in the room has the worst cancer prognosis, treatment, or winner of most side effects. The room was filled with typical cancer patients who were skeletons, but one had a miniature dog on her lap. This started the riots before the games began. The lady to my left started yelling that she had a compromised immune system, so why was this dog in the waiting area. She asked me to go and complain. I realized that I was 5 minutes from my next set of vitals. I knew I may be fired if I didn’t follow my team of nurses instructions. So, I decided to speak for this woman and asked about my “turn”. I was told that my nurse at this location was on a smoke break?! I addressed the dog issue while others started the yelling about this dog. I was happy that Jim didn’t come since he is deathly allergic to dogs and it would have been a good way to start our vacation. Soon, the dog was removed. Then, the games began. I counteracted the negativity and a queen Debby Downer who has had cancer since 2006 and nothing has worked. I pointed out that she is still alive. She kept with her negative comments and my positive team gained momentum with Melanoma, Breast, Leukemia adding their counter positive moves. This DD could not be beat. Finally, the nurse called her and the Bakersfield Leukemia told the nurse, “watch out this one is very special.” Then, the riots started with yelling who has waited the longest. I heard 3 hours, 2 Hours, and now I was past my deadline too. They voted for me since I won the worst cancer, but had best attitude to go up to the front and ask what is the delay. I heavy accented nurse yells, “JUN Teeman” . I stood up and yelled, “I won”, and their was applause. Unfortunately, it was for John Teenan or something like this. I was told to sit down. Then, my turn arrived with my smoke break nurse who smelled as if she just lit up a cigarette. YIKES.  Lung Cancer was not happy about the odor especially since she never smoked and was a chief dog complainer. I got applause and left the game. While it was fun playing, I realized how important it was to work “the crowd” and give them sunshine moments even when they were in frustration and much despair.
While I waited for the doc,I recognized his new fellow from Cedars. I never forget a face. He introduced me as if we were old friends. I chimed in that we were tight and go way back. Then, doc turned a lovely shade of red. He told me I needed a brain scan that they forgot to have me do prior to the study. I will do it next time and I can do it at the location of my choice? Hoag please!  He explained to me no ziplines, no sword play, no craziness on vacation and stay out of the sun?! I laughed since Maui is not the best place to avoid sunlight, but it told him hat, sunscreen and shade will be my choices. I asked a bunch of questions,but he didn’t really answer since I will be joined by several other ovarian women who will start the trial this week.
Back to the other building where they were going to send out a search and rescue party. I noticed that there was a film crew in the infusion closet. What? I asked if it was for a reality show and the guy next to me said he would choose an alternative reality. No one knew what it was for, but my nurse was now a celebrity. We joked that it was for TMZ. The process continued too long and we were stuck in traffic.
I didn’t sleep that great from excitement, the rash growing on my hands and feet, and now the expected immune response where all your lymph nodes in various places of your body giving me jolts of mini pain. I think that this pain is good, since it means the drug is trying to work.
I’m going now to be with my boys and find lots of sunshine even though I will look for shade. Enjoy these last summer days! Find your sunshine and remember today is now. Don’t worry about the little stuff.  With school year starting, don’t get caught up in the drama of any kind. Just enjoy and appreciate those moments with your kids even though they can be Meanagers. ALOHA!

NO REGRETS!

August 22, 2014

So, I partied like a Rockstar and paid the price the next day. I guess I forgot that when you haven’t moved for weeks, then dancing is probably not the best idea. Plus, when you have a 6 inch catheter poked in your abdomen 8 times, guess there is some “recovery”. You know me. I am used to bouncing back fast, so when things don’t go my way, I tend to get frustrated or ignore the signs of something isn’t right. Since I had the cancer “liposuction” I think all organs inside were shifting around. I guess I had to remind myself that just weeks ago, my lungs were compressed, bladder stretched beyond max capacity, and intestines smashed with all the 15lbs of fluid. So, I ignored the signs of feeling like my bladder was going to fall out when I walked. This was a new sensation of all my abdominal organs falling out with each step. Of course, I ignored all the aches because I was and still am “high” on life. My “high” on life attitude must exude some positive energy force because I’m getting some really strange reactions like UPS guy giving me “high five” although I think he wanted to hug me?! The Walgreens and druggist staff practically jumping for joy when I picked up my drugs. I know there was some type of invisible positive force since it even worked at Walmart where you really need to be in costume to get any attention. Overall, I was so thrilled to attend Kayla’s bat mitzvah that I was driving my boys crazy with excitement. Of course, with the excitement came the surge of emotional joy which brought tears. This was confusing for all seating with us in the same row at the Temple except my husband who just smiled and held my hand. I know he was jumping for joy too. He kept telling me over and over how happy he is to see my lizard baby gone! Yes, dancing wasn’t the best idea, but gotta say despite my lack in dancing skills which can be verified by all my family members both near and far and anyone who knew me in Club Med days, I was going to dance no matter what. Alex even danced with me laughing the whole time. The best part was seeing all the kids all grown up with their bigger than life questions including some awkward ones. Every moment I cherished. Of course, the dancing created some stabbing shooting pains. I decided on Sunday to give into the drugs to recover. Yes, my body was yelling at me, “okay crazy high on life lady, stay in bed and stop moving so your organs can go back to where they live.” I am so happy to have a pharmacy at home with a variety of narcotics. This way, pick a pill and no more pain.

The week continued with operation Brickshare. Thanks to all who supported this adventure for Alex. Jim and Alex worked so hard to get everything organized for delivery of the 3000 school supplies, New Legos, and Brickbots. Alex says that if he was able to drive he wouldn’t need any help. He is truly amazing and the stories at each delivery site were enough to keep me even higher than high. Who needs narcotics! Alex is so passionate about this project and seeing those homeless kids in the shelter and visiting the organizations really put things into perspective for him. He explained how walking down the street is dangerous in those areas where drugs and gangs are everywhere. He also told us that having zero school supplies is one thing, but these kids face challenges each and every day regarding things that he takes for granted. He kept saying it is amazing that these kids are smiling and happy and want to succeed despite all the challenges. Even though a couple of weeks ago at Camp a kesem where having a mom with cancer seemed so horrible, frustrating, and unfair, this project put his mind elsewhere. Don’t get me wrong, he still has his moments especially when he has his analysis paralysis where he tells me his fears and how angry he is, but he also tells me that he knows how hard I try to be the best mom for him and that I’m the best mom. He even said I am better than many moms who don’t have cancer! He also reminded me of where I was just weeks ago and said, “Now you can drive, walk, and do most things.” True, nice that I have both Alex and Jim to remind me daily to slow down and not to get frustrated.

Of course, frustration is the name of the game in the cancer job. So, while I was defogging from pain meds, Jim was following up on the mystery of the sample taken from UCLA and Hoag. Yes, UCLA still seems to be a mystery. Maybe when they figure out where and what happened, they will solve the mystery of where my missing uterus is. Remember way back from a scan at UCLA instead of noting that I had surgery, they said uterus was missing like it was lost! Jim continued to follow up on new immunotherapy trial which we found out there was a hold up on insurance. Remember you can’t really be in a trial these days unless you have insurance. Just delightful! I had to be clear minded so I could spend 2 days of over 4 hours on the phone begging for my life and explaining to insurance that old trial didn’t work, plus I would cost them more money since I would have to have all tests re-done for new trial unless I start on 8/25. It all has to do with the last time I took the trial drug for the starting date. I ended up giving up and had to wait for Tuesday to get UCLA involved. Again, what do the sick people do or what do people who live alone and don’t have a Jim calling and sending messages to each and every person/doc/coordinator. I used to claim I was an organized person, but now admit that I do have chemo brain and a withdrawal from narcotics brain does not make for an effective communicator. Thank goodness for Jim who has each and every detail organized. Unfortunately this means that he is always one step ahead of the rest of the people. He read the protocol, he talked to the researchers. I may have been talking, but think I only mentioned how much I hated the factory. I am not a good druggy.

Finally, insurance approval and next up scheduling. Okay, here we go again. Lucky Jim read the protocol and made a list for me to guide me through what to ask next. I am still Dory in Nemo, so every 5 minutes Jim would come to my desk to remind me to send the email or call. Once appointment was resolved for Monday the 25th realizing that first dose of drug requires monitoring like last trial, but there are many conflicts of info like pre meds or no pre meds. Of course, I had to discuss with trial coordinator since the dose recommended was enough for me to either be on “crack” unable to sleep for days OR cause me to sleep for a week. Yikes, clinical trial stuff requires a whole new level of cancer job follow up. I guess it would be easier to be the patient that just says, whatever you say doc. We know how that works. Those patients most often don’t survive. In this game of survival, you have to stay on top of things. Despite my booked appointment, we are still nervous of what will I face on Monday. Out of my control, live for today, live for now, did all I could do.

Last tidbit was the cancellation of my chemo which got rid of all the fluid. I am unable to have this before the trial. Of course, this was cancelled without my knowledge and lucky at UCLA Westwood I have many who have my back, so they gave me heads up. I called clinical trial coordinator even though my oncologist understood from protocol that chemo was allowed, this wasn’t the case. I had to agree since there would be a possibility that my counts would not be good OR I would lose my slot in this immunotherapy trial which is something new other than chemo. If it works, it would tell my immune system to kill the cancer instead of what it does now which allows it to grow and grow. The balance of this is that we know that chemo worked, so I have to not live in denial and monitor my weight, symptoms, and avoid 15 lbs of fluid growth. It is a balancing act since you have to allow time for things to work.

In the meantime, I will get my first infusion for 6 hours on 8/25 and leave the next day for MAUI!!! Maui for one week is bound to be healing and my boys need this vacation just as much as I do if not more. It will be great! Time off from cancer job. So, I won’t be posting photos on Facebook, but have set up a blog which you can check. I will post photos and adventures there.

 

http://mauialohasummer.blogspot.com/

 

For many of you school has already started for your kids and you are caught up in the new chaos of being a driver and juggling your regular jobs. I know it all seems stressful. For those of you who have a few weeks left before school starts, you may also feel overwhelmed too. Believe me, I have those silly forms to fill out too and I barely remember my own name now. Just a gentle reminder that all this chaos, driving from place to place, and making lunches once again, are the small things. Honestly, your 2nd, 4th or 7th grader is not going to remember the homework assignment, but will remember when you played “hooky” and walked to your park or the beach or just hung out and got an ice cream after school. Please focus on the small moments which can be big moments because today is all we have. Today is NOW. Find your sunshine. I always to find mine, even in my crazy days. I know you can find yours. Until later…ALOHA!

I’m a ROCK STAR!

August 16, 2014
It has been a crazy few weeks. Like childbirth, I have some moments of clarity, but last week at chemo I remember nothing. I get flashes of memory like a slide show playing in my head: me brushing my teeth in bed, wheelchairs, crying, talking to my doc at all hours, not finding my voice. I apologize if some of this is a repeat since I don’t even remember writing the last post!  I was in the ER, had numerous visits to Hoag Irvine and UCLA with wacko meltdowns happening left and right. I was unable to eat solid food. My only concern was that I wasn’t belligerent or taking frustrations out on staff. I wasn’t, but I was emotional screaming that I didn’t want to die among other choice words. All my fears exploded out of my mouth like nothing I had experienced before. I do recall that back in 2010 with my “debulking” surgery I lost 3 days and watched numerous Netflix movies none of which I could recall. The combination of pain and fluid (ascites) grew rapidly and caused me not only fever, but delusions of who knows what. Besides the fact that I couldn’t wear a bra and had to have an emergency purchase of jumbo old lady underwear, I was “high” on steroids and narcotics. I do not make for a good drug addict. I think I did tell Alex numerous times during this crazy period, “say no to drugs”. If I sent you a crazy email, ignore it or chalk it up to my drug induced state. Now, I claim to be a rock star which I will explain later, but really it is you, my family, my boys who are rock stars. I do not know how Jim did it every day, every hour, and remained positive, calm, and was my voice and my brain during every medical visit. He demanded a fast way of getting pain meds for me and held my hand even though I yelled at him and even told him many times to “stop talking”. I admit a drugged me is not always a nice me. I do not know how I sent Alex to Camp Kesem, a free camp for kids who have or had a parent with cancer. I don’t know how Alex my brave boy looked into my eyes every day and told me that I could do this and everything will be all right. We had an intercom system using the home phone and I know I drove my boys crazy. My requests were illogical and often made no sense. I talked hours about nothing and everything. Then we found out a cancer buddy who has similar diagnosis, treatment, and ascites went to hospice. They could do nothing more for her. My doc never told me that and calmed my fears with each and every new idea.  He is on the NEGU train and his face said it all.

During my draining procedures, I felt the learning curve having never had the procedure before since I was always on “mission cancelled” either too dangerous or my fluids were a bunch of small pockets which prevented draining. I knew this wasn’t the case. So, my rock star husband and I went to UCLA where my doc came and grabbed my hand, but I saw the fear in his eyes. I was scared too. At UCLA, it is a one man show or should I say one lady show. She also must have had big lunch plans as she wanted to get the process over with. She was insistent if I was in pain she would stop. Jim knew I was in pain, but I put a smile one because I knew we needed all these vials of samples filled and sent off to various companies for analysis. These would give us possibly some answers of what these cancer cells are both genetically, mutation, and how they would respond to chemo. It would be better than the continual playing of treatment roulette. What I didn’t know at the time was that this procedure called Paracentesis didn’t have to be so painful. Her pressing and prodding looking back was insensitive and lacking in patient centered treatment. She must have had an important date or golf game. Jim kept asking questions and she hated him for it. I didn’t care because I needed to know too. What color should the fluid be, what is the foam, what are the pieces floating etc…She wasn’t nice, but did the process. By the way, besides the guided needle catheter being about 6 inches long and not feeling as much relief as I wanted, I was able to stand after the procedure because before I was doubled over. Jim made every effort in trying to ask more questions and take care of me. I was not helpful. We had to take one sample to our doc who would fedex the sample. The rest we had to rely on this lunch date gal and her inability to focus. We later learned the samples at UCLA were messed up. Was it due to lack of refrigeration or improper handling or urgency of lunch date, we will never know. All we know is the small amount that went FedEx was fine, but the UCLA is still today a mystery. My life, my treatment depended on it, but that date sure must have been important. It was out of our hands.
The draining procedures continued at Hoag Irvine and Hoag Irvine ER. My doc was even surprised that the lunch date gal barely took enough since 3 days later, I had about 7lbs of fluid removed. The ER visit was necessary as my lungs were compressed from the fluid and my bladder which is supposed to hold 300cc of urine was holding 800cc. I couldn’t urinate despite my efforts. I became delirious. Never before had I experienced such pain. I gave into the morphine and oxy and a pain patch which delivered the narcotics every hour. At Hoag Irvine, it was a professional show with an interventional radiological doc, 2 nurses, and an ultrasound tech. Every move was made for my comfort. Yes, I was poked many times so I had a constellation on my belly. My Hoag Irvine team was there to hold my hand and much more. Besides all this, they knew how to handle samples and I was the priority. Yes, I was wacko there too.
The next visit was to UCLA as the fluid kept coming back fast, too fast for draining. My doc came up with a chemo combo of Zaltrap (known as aflipercept ) and docetaxol. Here was where things got really foggy. I have flashes of nurses crying, staff crying, my doc with a beat red face. I knew it wasn’t good. The gave me tons of steroids to prevent an allergic reaction mixed with my pain potion. This recipe was a combo for crazy Joanie. I was wired or so high I couldn’t sleep. By the way, my doc also prescribed some pot pills, but many votes were in and against adding these pills since I was so out of it already. This was where I lost days, but remember some dear friends delivering puréed soup which was my doc’s suggestion. I watched a lot of TV and don’t remember any of it. I watched my NEGU video over and over again. Alex watched it too and said, “mom, look at all these people who love you, you can do this.”
Flash forward to this week Monday where I woke up 4 lbs lighter in one day. The chemo combo was working. I could walk. Talking was still TBD. I was weaning myself off the narcotics. Then, Weds came the visit to UCLA for more tests for a possible immunotherapy trial, but there have been so many mistakes along the way, I will believe it when I see it. I do have flashes of memory that I told my UCLA team about the factory stories. Of course, I was so freaked out in the waiting area on Weds that I came there without hair. The waiting room was filled with the typical grey faced, skeleton, bald women who smiled at me and looked at me like I was crazy. I was welcomed like I was one of the famous that come there with body guards. No one could believe it. They told me I am incredible, a miracle, crazy, and they loved what they saw. Nurses and staff yelled, “you’re back!” I knew it too. Of course, I cried, but these were tears of joy.
On a side note, I have to mention that CVS tried to kill me with an error in prescribing Oxycodone which said to take a teaspoon of pills. Once I was semi lucid, I called CVS complained and did my usual voice for many. I never liked CVS and have gone to Walgreens because of smaller mistakes. Of course, this was escalated to pharmaceutical board because they first gave us an empty bag and charged us. I am still wondering about the staff at CVS who may have sold my oxy on eBay or on the streets of Aliso Viejo.
I also have to mention that I have participated in twitter chats to help oncologists help their patients. I now have the hang of twitter. Even in my foggy state, I was brutally honest and kept to being the voice of many. I received many thanks from gynecological oncologists around the world! Gotta love the internet.
I gave up momentarily on the message boards, not because I didn’t want to help. I had to focus on myself. This week, I went back to answer the many questions since now I have reached 23 protocol since 2010!
Cancer sucks. On our way to pick up Alex from camp, I learned that another one of my virtual cancer buddies who I have helped passed away yesterday. She had sent me a message during my drug induced days that I never answered and now she was gone. Again I tell you to hug your kids, listen to them, find your sunshine and make the most of each and every day. Yesterday my sunshine was picking up Alex from camp. He ran to the car smiling. I opened the car and did my version of “running”. He grabbed me and never had hugged me tighter and said, “mom, you are better. You can walk! Wow! I missed you mom! I’m so happy you are better. I was worried.” This was followed by a story from his unit counselor telling me about Alex rock climbing and making it to the top. His counselor’s best moment and mine too. Today is now. I am so happy to be alive!

“Send the sunshine down my way whenever you call my name” James Taylor’s Blossom

August 7, 2014
I really don’t have the words to express my appreciation not only because I’m on heavy duty narcotics, but emotionally tears of joy fall so easily now each time I receive an amazing message whether Facebook, text, or voice. I have to laugh way back when Jim told me to sign up for Facebook to see what it was all about. My connections to childhood friends, high school friends, new friends, acquaintances, nurses, doctors, researchers, and family both near and far have provided me the best support group who motivate me in my darkest times to keep pushing. This virtual support group is something I highly recommend for each and every cancer patient.

These past days I was reminded of the NEGU video
Check it out here
My favorite teen motto song of mine in high school, James Taylor, Blossom. You see I was big on spreading sunshine even in high school!
I have to honestly say, I have had more melt downs these past few days.  Mostly due to severe pain and being behind the fast growing fluids. In the very back of my mind, I knew I could take control, but in the front of my mind clouded with pain I couldn’t find the answer and panicked. I called my doc more times over the weekend than I ever had since 2010. He came up with a plan. I had my boys with conflicting cheerleading messages which I only lashed out my frustration on them. All was resolved with a plan to control the pain on Friday night and go to the ER on Saturday.  So, 7lbs fluid was removed and I promised to not let things get this bad again. Luckily, for my Rockstar hubby saves the day by not listening to me and knows the pain just by seeing my eyes.  Things were in motion. I love Hoag irvine and for many personal  selfish reasons, I will NEVER have that procedure done at UCLA.
My days have been in bed, resting with pillows, and focusing on being comfortable. My doc tells me not to worry about food, but remain hydrated. I rest and find my sunshine in all your messages and listening to Alex’s piano and trumpet.  Plus a bunch of silly TV shows help put me to sleep. Today I went to UCLA Westwood. They fit me in even though they were full. There is something to be said for entire staff and nurses welcoming me like an old friend or family member. Several I saw had tears in their eyes. Of course, my emotions took over. I realized that to be comfortable, I had no wig, comfy clothes, grandma undies, no makeup, BUT earrings on and I was one of those patients. I still don’t feel bad for telling those to get off the pity pot, because I see how their physique is and they should be getting dressed for the closet -no PJs! I was that patient, grey faced, thinner, bloated belly. I looked at Jim and his eyes were watering. Since we are telepathic, we decided none of that. My doc walked in and said, “okay okay,okay (his version of Matthew McConaughey’s all right, alright alright but in a slight German accent) This meant deep breath and let’s do this. So unknown to me in my drugged state, we began with much premeds, targeted drug and chemo. A bit of a hammer, but sometimes you need the hammer.
Here is what I know:
I am so proud of my boys who handle each challenge and my outburst with positivity and support.
I am in unknown territory for cancer. There is no cure for this cancer and only treatments. This means that docs have no answers and no one does.
I continue to remain hopeful and determined, but this path is not easy. I must continue to surround myself with positive friends, family, and even strangers. Emotional vampires are not part of my medicine. Seeking sunshine in each day is what it is all about. Knowing today is the most important day and I may be more focused on moments, minutes or seconds, but I’m going to make them count. Find your sunshine!

FIND YOUR SUNSHINE TODAY!

August 1, 2014

I have now found myself in a place that I never wanted to be especially just a week or so later surrounded by a circle of love and friendship along with far away friends and family holding my hand both physically and virtually. You can only rationalize symptoms and data for so long and I knew on Thursday after my doc’s message that things were not going as expected. It is a scary place to be when one moment I can hike for an hour and the next day I am unable to waddle up the stairs. Appearing to be pregnant with nothing other than cancer is also into a very positive reminder of the situation.

On Monday, Jim and I took the drive to UCLA for my scan. Besides what we were both experiencing what is commonly called scanxiety, I was physically unable to sit in the car. I could not bend, sit, move in any position. I could barely whisper a word since I later learned that the fluid compressed my lungs. It wasn’t possible to hide the pain from my boys. Whimpering and tears falling were not the music we wanted to hear for 3 hours while Jim drove us. I felt horrible for Jim having to try to drive in non stop traffic, passing multiple accidents, and hearing my whimpers. I tried every trick to take myself to another place, but gasping for air made this more challenging.
Of course, my journey has had its share of encounters of unacceptable healthcare situations. Remember the blood letting a while ago with one nurse not willing to do her job at a pet scan? This UCLA scan exceeded that event by a landslide because all 9 staff members (some nurses, technicians, and admin) all failed at every aspect of their job. I have given up long ago about healthcare workers enjoying their jobs. I am a firm believer of always informing managers when anyone goes above and beyond to show compassion and care. I do have low standards in this regard, but I have a zero tolerance with any healthcare worker who is not doing their job and impacts the standard of care and my treatment. Without having to re-live the entire ordeal, the highlights include lack of instruction or care for drinking contrast, lack of care for any of my allergies to tape and adhesive, improper access of my port including spraying disinfectant in my eyes, dripping down my neck while I had to sit like that the entire scan (imagine having an itch on your nose and being unable to scratch), and to top it off was the nurse who responded to my concerns with, “I’m only the nurse” and yelling angrily when asked about proper instructions about drinking barium “beverage”, “don’t take your frustrations out on me.” The unfortunate result of this scan is that the lesion that grew in my pelvis was not lit by contrast and contrast did not reach the lower bowel. Now, if I approached my scan like I do every aspect of my treatment, I would have found out how much I should drink, the timing of the drink, and the entire process, but since I am not a fake scan technician or even a fake nurse, I never “learned” these details because for the past 4 years a scan is a scan is a scan. This was not debulking surgery. It was supposed to be simple as far as procedures go. What was my sunshine moment for the day? Talking to the patient advocacy at UCLA and Director of CT who assured me this would never happen again to any patient.
I saw all the images the next day with my doc. Also, prior to the scan and horrific drive, I called my doc who had seen a photo of my belly (we sent via email) and begged him to have me change procedure to Monday. He made a lot of effort, but sometimes things are out of his control. The fluid I had seen on my scan was in every area of my abdomen surrounding every organ below and above. The entire cavity was filled in days.  Thank goodness he tells me I never smoked and was not obese. Good, 2 positive things! Also positive is that I have no metastasis in lungs or outside the abdomen. It is difficult to be positive given this is the worst scan I have ever had since my diagnosis in 2010, but have to say that I’m happy to be alive. Perspective is what it is all about and focusing on the moment, making the most of each day, AND not sweating ANY small stuff.
Tuesday came for the procedure and I knew I had to be in a better place for this process. I also knew that nothing could be as bad as Monday plus this was an outpatient procedure. My wonderful doc was there waiting for me, grabbed my hand and told me I will be able to breathe and get relief. At that time, I had no idea what the scan showed. We looked at frame by frame of the scan after my procedure. Procedure had the usual high level of competence expected at UCLA plus compassion and understanding, a plus!
Now, it is Friday. I’ve had a fever since Wednesday. I’ve learned that all this fluid pressing on my lungs can cause these pockets to possibly become infected. The trick is to avoid pneumonia. Not that dreaded illness…bad images appear in my mind from May 2013. My doc wants me to get drained again Monday, so here goes that effort. Tuesday I’m scheduled for procedure LOCALLY!!! Here is what I know: I hate that this has caused me so much down time. I’m in bed unable to take even multiple trips up and down the stairs. I hate that this impacts Jim’s work, Alex’s every day fun, and has caused me to break dates I’ve made for our family. What I hate the most is that my big plan for daily life is to always be as “normal” as possible is greatly impacted again. Even though the normal has changed, I am sad with this situation. What I also know is that I’m a trooper, more than a trooper with a high tolerance for pain, and I know how eating is important even if it takes all day to eat a bowl of soup. I also know that I have all of you who continue to cheer for me, pray for me, send me great messages in text or email, and I’m surrounded by love. I know NEGU and I know I can find sunshine in each day even in these days. It can be the photo you send, the message, the text, the music Alex plays, the laughter of my boys rough housing. These sunshine moments keep me motivated. Please I encourage you to listen to your kids, the sounds around you, and appreciate every moment. Don’t sweat the small stuff…it really doesn’t matter! Take it from me!

#NEGU: never ever give up!

July 18, 2014

The factory was still the same circus act although a bit improved for me since I had one of the happiest nurses. It was a long day that only once did I have a slight panic and needed to get air. I have to say that they were trying. Small changes happened, but complaints from the nurses center ring were heard. We cannot expect changes to happen overnight. Hey, someone even asked if we had kids?! AND asked how I was! All I know is that I made something happened and I will continue to try to change the factory for the better.

Here are some messages of NEGU from myself and Stuart Scott. Find your sunshine today!

 


Follow

Get every new post delivered to your Inbox.

Join 37 other followers