A day of normalcy!

March 20, 2015

On Tuesday, I had a day of normalcy. Since my chemo last Wednesday, I have had a new ailment each day. It started with horrific nausea that no amount of anti nausea meds would help. I ended up sleeping the days away just to avoid being more nauseous which almost helped. Then, came the diarrhea, then vomiting, then more nausea. Unfortunately, I am taking so many things so who knows what is causing what. All I know is that food hasn’t been a priority, but staying hydrated is. the vomiting at night caused Jim to cancel his trip. Despite all the plans for rides, food delivery, and day visits, we did not have any night time coverage. Jim was not comfortable leaving us.

In between my fog, I still did physical therapy and managed to walk to the end of the block. What is still so frustrating is that this healing of the body is taking much longer than I thought. With the wound, the Cancer, and the colostomy, my body is doing the best it can do. I almost hear it telling me, “hey lady, you expect me to heal all these areas? Be patient, one thing at a time.”
Then, Tuesday came. It all had to do with what we call the Joanie project. Now, when I was in the hospital for two months, we had some really scary moments and some panic on my part. I hadn’t done all I wanted to do as far as “the plans”. Besides the general burial wishes, funeral wishes, there was the idea that I wanted to write letters to Alex for every major event and then every birthday. This idea also expanded to letters to Jim, my family, and more. When the recovery phase came, the reality of that task plus the energy and emotion it would take is something that I don’t have. So, a while back I thought I saw an ad with doing a video recording, but I couldn’t find this ad. Also, had friends look for it with no luck. Then, I thought about Megan who did Alex’s photo booth for his bar mitzvah and she normally does videos. She was so easy to work with and a great communicator. I sent her an email not really clear on my “joanie project”. She and I met and we both understood that this would be a fun video, upbeat, and would somehow capture me. She had suggested a make up artist, and at first I diasagreed. I’m so glad I listened to her. Raven from Vanity Belle Beauty turned me into a normal joanie from the grey Cancer joanie. I felt like me again. Jim said I looked beautiful and healthy and was speechless. The time passed quickly and we had a lot of fun. It was emotional at the end, but when I talk about tomorrow’s it usually is….I highly recommend doing a video project, but more for an anniversary gift or milestone birthday. It is fun to remember all the good times and the great memories. It is more fun to know that this part is done and my message of finding your sunshine, not sweating the small stuff is recorded in my voice with my healthy face. I cannot thank Megan enough for making the process so easy and fun and Raven for making me feel normal.
You can see for yourself the photos…
watertree video modelwatertree video 1watertree video 2watertree video 3watertree video 4

Sunshine is everywhere! look up, stop texting, emailing…now.

March 6, 2015

Ocean wide on left with wispy clouds over Catalina and snow capped mountains to my right…what could be more beautiful. A nice crisp California morning with bright blue sky and the hazy outline of purple mountains majesty fills my heart with joy.

Not so joyful is wearing the wrong bra, but my one exciting trip upstairs was so thrilling that I managed to find a shirt I could wear but forgot about the bra. Yesterday my pt brought me upstairs. Positive was that unlike at ucla I didn’t feel like I had run a marathon. This is due to my living in a hospital bed for 2 months. I jacked up my back. This means I can only use one leg to go up and one leg to go down. Hey, I’m just thrilled that I did it. Yes I did cry the first time and my pt said he was equally as happy to share this moment with me. Alex was very eager despite his late start day, jumped out Of bed to have the opportunity to be part of this milestone. So what is a little more discomfort wearing the wrong bra. Honestly this is way better than my exit from ucla wearing a hospital gown.

There is also the need to look and feel cute. Even though it took a huge effort and I had some difficulty putting eyebrows on straight and trying to look less Cancer pale, I felt good with the clothes that kind of fit. My gap order didn’t get here yet, so I was stuck with my “lounge wear”. Lucky my sis bought me a bunch of clothes that did work and looked like clothes instead of pajamas.

Regarding my new routine with living with a colostomy…don’t read on unless you have a desire to discuss what is now my singular focus: poop. Besides all the strangeness of how it all works, I have to say that there have been so many calamities like the bag exploding and getting rained on by poop. Lucky my sister was on FaceTime telling me not to panic. I can look back now and almost laugh. Especially when the nurse said, “I’ve never seen that happen!” Of course, leave it to me. Then, once I thought I was almost professional, noticed that there was a hole in the bag…so another mess. Lucky I was wearing disposable hospital clothes. Then, there was a nurse giving me the reality of the poop situation calling me anal and saying you can’t focus on a clean bag because too much cleaning causes infection and stop examining it. I agreed reluctantly only for him to tell me the usual of “models have it, people all over have colostomy bags”.., I don’t really care about people because I’m still in shock about not being able to eat the food that I love. Not sure how a dietician thinks that after I told her I like to chew and I was a vegetarian and how much I love salads that she suggested i should purée a salad. YIKES! No way. No more fresh fruit, raw veggies, or salads or bad things will happen. I decide to think of veggies and fruits I like cooked. Of course, I think of cobbler, pies, mashed potatoes…I’m alive, so I will focus on my latest passion of chicken legs and croissants. Not together.

Besides the bag, I have the entire wound incision to be handling daily. I believe my belly button is missing. I really cannot look at the holes in my abdomen. It seems unnatural. it is not like I’m going to my Club Med days or becoming a bikini model, but what the hell is going on with my belly. Gone is the giant lizard baby. Lucky as Jim and I had talked about before, it was good to have a 10lb cush of weight. I had gained 40lbs of edema which was followed by that loss and an additional loss of 20lbs, so I’m back at my high school weight but without any muscles. I can’t get over the flap of tricep blowing in the wind and hate to say I miss my big ole butt with the nice cushion. Sitting on a bench or a bad chair just doesn’t do it with a bony butt. I’m sure some of you have always had a bony butt, but this is a new sensation.

Lastly, the cancer which is hanging around the colon. It needs to go away. Despite the 6 hours of driving to UCLA, I did enjoy the sights and exiting the house. What I didn’t enjoy was the pain and discomfort along with fatigue that came after…it was the first time I had pain again since I’ve been home. My boys came to my rescue rubbing my feet, calming me down, and cheering me on until the meds kicked in. My blood work came back and my tumor marker is slightly up, and the rest except one liver number which we have to watch is fine. My doc said I needed to add the pill drug at half dose to start. He feels strongly about it based on all his explanation which he lost me after 5 minutes, but Jim understood. I started it tonight which of course the side effects are eye issues and skin issues besides the rest of the ones I have experienced. Next Weds is the duo of chemo drugs.

Tomorrow is another trip upstairs AND hoping to walk outside in the real sunshine. Lots of sunshine to come…please find yours. Remember your sunshine can be the simple things like holding your husband’s hand or hugging a friend. Try something new out of your comfort zone or better yet make that call,text that friend, send that email that you have been putting off. You will be glad you did. Say what you mean, tell the truth and be honest. Most importantly, be kind. Be kind to everyone you meet today especially those who really bug you. Kindness goes a long way. Look up, stop texting, emailing because it can all wait. There is sunshine moments happening all around you, but you have to take the moment to capture them. Today is now and now is what we have! If it all seems too much, one hour at a time. Hey, often I’m just at one minute at a time. Please stay in the moment. Now, today.

Best sunshine ever, being HOME!

February 27, 2015

A home healthcare which is not a home HELLthcare! Would you believe a real nurse came over and reviewed each medication with me and spent 2 hours with me and a real PT who evaluated me with no surprise of weakness in legs followed by the lecture that just because you feel 1000% better in mind, you must allow your body to heal. You all know I have no time for that, but okay I listened. All this real home care and more! A call from a nighttime on call nurse who said if I need anything to call, but explained that she mostly does a lot of talking and not medicinal support as late nights are difficult for the newly home patients. Don’t I know it! Besides waking up automatically at 12,2,4 for my vital signs only to realize that I am home, I completely understand why people who return home from the hospital don’t sleep.

Being home even though stairs are my next challenge, having my dad here with me along with the best boys ever, and all of you an email, text away, is best medicine ever. I’m currently in chemos land with many visits from the team of home healthcare. I must learn how to eat with having a colostomy with a visit from a dietician this morning. I’m learning salads will not be my friend which saddens me, but I’ll eat anything to be here and enjoy good days.

Biggest issue is no clothes that fit, so lucky my baby sister who takes me shopping via FaceTime is a huge help along with other excellent shopper friends. It is hard to be a midget and flubby without muscle tone. It just isn’t a category in old navy.

Best sunshine of my day yesterday was standing and cutting an apple for Alex for a snack when he complained that when he cuts it, it just isn’t the way I do it. Best sunshine coming home was seeing the booklet made by Kelli Clifford who compiled the best of my blog plus photos into this booklet that I can bring to chemo or mail to people around the world. Best sunshine this morning, Alex having a bad hair day and asking me if I can help even though I’m not a hair stylist which I explained I styled many a Barbie hair. We won’t share with him that I cut all their hairs off eventually! Best sunshine moment yesterday was real Starbucks coffee and a croissant.

So, my days are filled with pills and home health visits and naps. My goal is to get upstairs AND exit my house just to walk maybe to Tiff’s?

Thanks for all your prayers and continued support. As always contact Tiff for any questions since I’m not answering my phone much or looking at much online….soon, but not yet.

My message of the day…be kind to others, stop and take a breath, live in the NOW, find your sunshine which can be the simplest of things, say thanks, and know there is always someone who may have challenges which you may not be able to see…just please don’t get caught up in the small stuff. No one is going to care if your house is spotless or if the piles on the counter are growing…it all gets done eventually. I’m looking out the window seeing a lot of sunshine and listening to French radio trying to remember the words which were part of years of Club Med days…great memories. Find your sunshine! I have found mine just being home!

 

A letter from Joanie

February 19, 2015

The next bit of info is something you may not be able to read now or like me are in disbelief about how much time has passed and how I miss all of you and love you very much.

I have a million stories to tell about the care or lack of care or calamities or ambulance ride with 3 hunks to UCLA Santa Monica from Hoag. I have not the time nor the energy to tell them all now. Know that is my hope to share my journey as I always have.

On Jan 4, I went for a hike with alex for over 3 miles and ate a burger for dinner. That night I came down with horrendous pain in my abdomen. My Cancer was progressing as we were aware, but I was unsure of this pain. I think it was the 4th when I went to Hoag Irvine ED where my besties greeted me with open arms. Long story, I was there until the 9th where it was determined I would die without the surgery to unblock my bowel covered by Cancer. I would be getting a colostomy. I was transferred to UCLA Santa Monica not ideal but there were no beds. It was a life or death situation and my doc fought hard to fight for the last bed. It was between me and an organ donor. You know me…I thought what happens to that family.

I was at UCLA Santa Monica from the 9th to 2/1. I had a wound infection and was very serious. My body was full of edema. I asked my doc if my body was done even though my mind wasn’t. My doc was convinced it was a difficult road, but I could do it. My oncologist Gottfried Konecny was there for my first bowel movement, came to visit at 10:30 many evenings, held my hand, held a bucket when I threw up. He is one incredible doctor. I cannot explain how difficult it has been for my boys, my mom and sister who were there with me at UCLA for a week. I had great care at UCLA. A harpist, urban zen, teams of docs, but things are complex…then I was released to home healthcare from HELL. These people were idiots. They did not do my wound care and did not handle my pain meds. Too much too soon on my own. I went back to Hoag irvine after Monday last week went for blood transfusion. It was Tuesday night…I came with pain. I could not control it. It has been a mess here trying to find the balance.

I’m now at a very difficult place. I need to get the right care to stay alive for as long as possible. Each day is a gift. My continual message is to be your own advocate and find some sunshine in every day.

I was told I’m in a unknown place with very poor prognosis. I am looking for good days and planning as much as I can with my wishes for my family and for all of you.

Lastly, I ask you to contact Tiff only for any questions or any help you think you can provide my boys, my parents, my sister, her husband and her kids. Please pray for our family. Please know I am not giving up, but the body is tired. I want you all to be there for my family like you have been and I also know that it is not easy for you as it is life shattering for my family. I need for alex to have as many happy days and as much normalcy as possible….so if time works, give tiff a call if you have an idea for a fun outing for alex. Know that my rock star soul mate husband is broken needing “oxygen” on a daily basis as he watches me struggle to survive each day. Jim is my partner, the love of my life, the one who has been there for me every second of this crazy ride. I’m proud of Alex and who he has become. No one can fully understand the love I have for my boys and the motivation it provides me to make these difficult decisions. I’m one lucky gal with wonderful friends, but most importantly a wonderful loving adoring baby sister who will do anything I need, a devoted mom who stayed up for 3 week 24 hours a day until I saw in her eyes that she was wiped out. A dad who has sacrificed so much for me to become the woman I am today.

Please pray for my family. I ask that no matter what happens you will be there for my family every day forward in cloudy and sunny days.

I ask you again to find your sunshine always.
Much love
Joanie

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/


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