Archive for May, 2015

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

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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.