5/24/2015— Let us remember Joanie forever

May 26, 2015

This is Joanie’s husband Jim.    Joanie has poured her heart and soul into this blog, and we know it has helped countless people.   I hope this blog can stay here to continue helping those afflicted with this and similar cancers.

On 5/24/2015 Joanie’s battle has ended.     Her spirit lives on in our family, her friends, and countless others touched by her one-of-a-kind unique spirit

Love of my life Jim so much many don’t realize

May 2, 2015

The love in my heart belongs to Jim

I have written so much, but the most difficult thing to write has been the reflection of the tremendous love and courage my husband has exhibited towards me during our marriage, and particularly since my diagnosis.   It is difficult because it is so amazing, it is hard to put into words.     But I have been working on this, and as the words have started to escape me with my failing health, I felt compelled to share our unbelievable story of devotion, focus, love, and courage as best I can.

Throughout our nearly 20 years of knowing each other, Jim has inspired me to be my best.   From when he “found me” as a highly under-paid clerk — to my career change as a Oracle consultant — and everywhere in between – it was Jim that helped me recognize my potential, helped it flourish with his love and encouragement — and helped me become the person I am today.       From advice on how to handle political situations, to encouragement to assert myself appropriately — these things were just the tip of the iceberg.

We hear the term soul-mates, and wonder what it means.   We see many individuals living together as husband/wife – but somehow still individuals in most ways.    But with Jim, our souls are connected.  He can look at me and know nearly instantly what I am feeling and how to help me.    I think he feels the same way about me.    We never wanted to do anything separately…..Any length of time, anything to see and experience….doing this with each other was the only way to experience it (and after Alex came into picture with him too!).    Any major decision – we would be in agreement on, or work it out…. We were and are totally in sync with each other and our marriage has built on mutual respect, and extremely deep devotion to one another.

When I was diagnosed in 2010 we all were devastated, and in shock – of course.    We did not know what to expect and if I would survive initially, then if treatment would even work.   This was difficult time for sure.  Life altering moment.     As I was responding to treatment, we were more optimistic — but then recurrence happened almost immediately.     Jim remained optimistic, all the while learning more and more about this disease and options.     First line-treatment, second-line, and third line treatments are relatively standard care.     If an Ovarian Cancer patient survives past 3 lines of treatment things get a bit murky.    Jim was the first to understand the varying options…..understanding how my body had responded to various drugs – and always considered these aspects into his discussions with our Drs.    It is Jim’s highly tuned attentiveness to me that time and time again, saved me.   From asking about the right medication, catching mistakes and making specific requests – Jim has constantly been there bailing me out…often when I don’t even realize it.    He always had a keen sense of when a therapy is working, and when it is time to move to something else.    I would sometimes want to wait too long, holding out false hope on a failing therapy.   Jim would get frustrated, yet always allow me to make a decision — almost 100% of the time he was/is right with these things.     Very often the Drs drag and are reluctant to move quickly — losing valuable time and allow disease to progress unnecessarily.    I see all around me, all the time, patients succumbing to the disease because they didn’t have a “Jim” who understands what things look like when they are working and when they are not.

Every clinical trial I have been in or tried to get in except for one, Jim had found – and presented to our Dr as options.    As time went on, nearly every new therapy and combination Jim had come up with, worked with Drs and insurance, and made it happen.    Many times these were the first time these drugs were either used at all at UCLA, or in a specific manner.   Many of these experimental treatments worked well, and extended my life and maintained quality of life.     I am nearly 30 regimens into this disease, and literally hundreds of infusions and trips to the Dr for treatment.   For all but a handful of them through the ½ decade – Jim was there – not just driving me.    He most of the time had an active role with Drs with the treatment type and dosing.   Drs looked to Jim to guide them in this territory with references and documentation Jim would find and share.      They are constantly amazed with what Jim found.

Many of the new or unknown treatments Jim had learned about through his constant, endless research he does on my condition.   He used his communication and computer skills to be ontop of every new announcement or new clinical trial.    We have discovered the therapies that have worked for me for the first time at UCLA were then used on my other Cancer friends…..    Jim had indirectly saved/extended many lives through the help he has given me.   The leaders of the Clearity Foundation (Ovarian Cancer Non-Profit), have a special place in their heart for Jim and his relentless pursuit for new help for me.    They introduced Jim to a few other’s so they can benefit from our approach.    Even these drug researchers are learning about new ideas through Jim, and gaining new experience with my unique treatments.

After 30 regimens, there are few people with as much experience as Jim and I .   There is not a single doctor that has seen a cancer patient go through as much as I have.   This is thanks to Jim’s ceaseless mission in helping me.   It is often thought by new people who meet Jim, his questions and comments, that he is a professional cancer researcher or doctor.   Lately this is happening each and every time he meets a new Dr.    He always says the same thing, that we have been through a huge amount and have learned a lot.    But he is very modest.   Nobody, I mean nobody does what my husband does for me.   I have met and seen many husbands and families, and none, not even close, do what Jim does.  I owe my husband many of the wonderful years we have had since my diagnosis.    This is not what is to be expected — this is to be greatly respected.

Jim has somehow figured out how to balance putting my cancer job first, with maintaining meaningful employment, great insurance for me, and taking care of Alex.   This is all highly stressful and difficult, particularly as I have gotten sicker of late.   Jim gets only hours of sleep a night…and over many years this takes its toll on him.  But Jim continues to do what is needed, from doing almost all the shopping, worrying about each meal for all of us — fixing and cleaning up the house, while attending to every other detail that I used to do (Bills, Alex school, taking Alex to all appointments including Trumpet, Tennis, special events, etc… )  Jim gets Alex up and ready every morning for school (not easy), makes his lunch and gets me breakfast all before his day of work.   Jim has taken on the world, and he is utterly and totally amazing.   Many see it….but few understand the depth and commitment he has demonstrated towards helping me on my cancer journey and raising Alex well, with his needs/stresses along the way.

It has reached a point where every Dr Jim comes across eventually gushes with appreciation and shock of how ontop of every aspect of my care Jim is.   Even my last stay at Hoag, I would have probably died if Jim didn’t connect the dots and strongly suggest we try steroids before an NG tube….ultimately allowing me to go home.   He is not just there with me, he is the hub of my care — he has been the rock of stability among my turmoil…making sense of everything better than anyone.   During my stays at UCLA — he would do the impossible drive almost every single day so he can help me, plus come home to handle all the things needed to keep Alex’s life as normal as possible.  Just doing this drive one day is hard (anyone who does it knows it)….but all week is unbelievable.     He is human too…and has a hard time when I am in uncontrolled pain.   This is because his soul is attached to mine – and he hurts — sometimes worse than I do when I am hurting.   Just in a different way.

How does Jim get all these out of left field treatments approved and made to happen?    Another amazing feat – Jim figures out every advocate he can get within his company.  Obtains emotional buy-in and political pressure….works the system.   Tells me when I need to win over people at the Insurance company….and I do my part.   Put us together, and we made it happen — time and time again, getting the absolute first access to the latest drugs that are off-label and normally not even covered or allowed.  Jim made it happen — from the President of his company down to whatever level he needed to be.       After Jim figured out the system – and how to work it….he didn’t rock the boat.   Jim put is career on complete hold…somehow managed to keep his job (didn’t go anywhere but that is what he wanted for stability for me) — -all to sacrifice for me and my best chance of health.    Nothing was more important to Jim than me having every chance to feel better, and recover if possible.    We know of no other individuals who have battled this disease that have had as many opportunities as I have to beat it — this is due to Jim opening these doors.   I had to do the treatments – ultimately the hard part….but without the opportunity I would be done.   This is all in the backdrop of knowing this disease is officially not curable.      Jim did not accept anything but 110% effort all the time.   That is my lovey..my soul mate..my hero….I love him more than words can express and have been the luckiest person in the world to have met him.    I wish everyone could have somebody like Jim – and understand how cherished and wonderful our relationship is and truly come to understand and respect how amazing Jim is. Without him these weeks, I know I would not be here.

days of pain don’t make for sunshine and clairity

April 28, 2015

since I last wrote, I was in the UCLA Santa Monica hospital for about a week from the April 5 to 10.  Cancer continues to progress with more ascites which I had drained at UCLA about 1.4 liters. Then, I went to Hoag Irvine to discover the continual vomiting was from a partial bowel obstruction which I had during the prior week at UCLA, so don’t get me started. Yes, UCLA was a big mess, but lucky my mom was there for the week. Unfortunately, my oncologist managed to break his mandible in 2 places he same night I was put in the hospital. Our intention was to get pain controlled and diarrhea at the time, but have treatment soon. This plan did not work and UCLA did not want to do the paperwork at the hospital, so they had me check out to get the chemo. Why didn’t they address he partial bowel issue. It just shows you if one piece is missing from your team, you suffer. Another doctor immediately covered for him, but I was added to her list of patients, I don’t know her 5 years, in fact I had never met her. Oh, yes we still have a slab leak which hasn’t been fixed, just stopped so we are without laundry machine, and one bathroom. It will be fixed eventually.

Last week, another mess on Tuesday with continual vomiting. I went to Hoag Irvine this time for what I thought was fluids.  I was told I had a bowel blockage was told to call my family so I did. It ended up to be partial and I was put on bowel rest, liquid IV food, to liquid diet. I cannot have surgery, but I did have Paracentesis and they drained 2.6 which was the most fluid I ever had taken. Every other day I need para. So then they took 2liters and 2 more liters and I’m scheduled today again. My sister, dad, and mom came on Thursday until Sunday. Much reality with the progression has happened. All I need to do is control the pain, control the fluid, and attempt to get liquid nutrition. All I want is less paras and more days.

Yesterday, I had chemo at UCLA. They added the drug to stop the fluid growth but the chemo is for the Cancer growth. I ran into a mutual Margie friend who I hadn’t seen since

December and when I saw her then, I thought it would be the last visit. She always said we are very similar never giving up hope. She is still here and living in an assisted living place, two weeks ago she was in the hospital at he same time I was. Calamity after calamity has happened with her except now her blood is broken which can happen, so she may not be able to get chemo. She still has attitude and made me smile and cry at the same time. Four months and she and the doctors haven’t given up.

Darkness continues…I lost my balance on Tuesday after the Paracentesis and hit my stoma in the wrong place. Off by ambulance to stop the bleeding to Hoag Irvine ER. Then the darkness continues, too much pain, bowel issues, I’m not present. I cannot even look at Jim or Alex because tears will just fall. With the help of palliative doc to the house, I avoid visit back to the hospital. No pain is the goal, being present is also a goal. Monday is chemo again.

I am now focused on the day, the minutes, the hours and cannot be in pain, must manage a lot like my bowel, my liquids, the swelling/need for paracentesis. I must stay present and not be a shell of a person to find my sunshine.

I got through the week with Jim’s care and palliative doc help. Avoided the hospital but in and out of pain. I have lost my voice. I have no strength to talk. Days went by and most were blurry and pain free. Focused on all what is to manage which is too much.

Back to ucla chemo and my doc is still out. A ride of pain in delirium. I started in the walker moved to the wheelchair. One appointment with radiologist was a blur. I could not communicate and all I did was cry and sob most of the day muttering incoherent words of sorrow. My nurses and staff came to hold my hand and whisper words of prayer and strength. I continued to cry and sob. Doc thought I need para yesterday. Big mess and without regular oncologist skill to manipulate the broken system I’m left with a visit to ER. This turned into a mess and ER refuses to do para, requests IR to do it but they won’t do it unless life crisis. Not sure how much more life crisis they needed. We spent 3 hours without seeing doc or nurse or anyone. Again without a doc who knows the system, I’m stuck. Control my pain and drive towards Hoag Irvine and home. I want to go home. Tomorrow or today is new and we can try para at Hoag Irvine.

This is a strange space by minute, by hour, by day. I’m not having a voice. I may glance at Facebook, your emails, your texts, but I have no strength to answer. Little by little there are good moments, but the moments come and go. I cannot dress myself or bathe with ease. In fact most things are.difficult. Hope you f I ND your sunshine and mine is a bit cloudy. I may have seconds which is ok. Please don’t sweat the small stuff. It isn’t worth it. I continue to appreciate your support for my family especially for my boys who have to see me like this while trying to find my smile which seems to be lost now.

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

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.