NEWS FROM THE FRONT

With partners in waiting after 5+ hrs at LAC USC. The lady in the center is  facing her 2nd recurrence w/ Cancer..  Of course in the same bunch before us was young man with simple cough and cold. 

So this past week have been mostly about going thru all the red tape to find care… My current destination is LAC-USC where I showed up early with all my paper work, and waited closed to 5hrs just to get a referral to see someone at the ENT department.

The day of my appointment I arrived about an hour earlier, still ended up waiting another 4 ½ hrs… and ended up having to cancel a call back for it. I don’t regret it, my priorities are straight and I know, I know, is like that everywhere. It is just the nature of things. But it is frustrating when you been waiting for a while, being bounce around from one department to the other, and just when you are about to finally be seen by a doctor a receptionist tells you that someone misspelled one letter in your name and because is not matching perfectly your ID, you need to go Medical Records, make a line and correct that before you get in line again to see a doctor. Aahhhh!!!

I finally got to see a first year ENT resident, really sweet and wanting to help. He took my history and all the test results. I was asked me to give them the actual biopsy slides, (where the Big “C” was discovered) so their pathology department can review them and make their own diagnosis…so I was able to get those from Kaiser. There was no attending or chief resident around, so now I just have to wait. They are going to review all the test results with their seniors and corresponding departments, and see me in about ten days. The residents explained that because this type of cancer is not very common and super unlikely for it to be in the ear… is imperative that they make sure it has been properly diagnosed. It makes sense.

The one piece of advice I got from another resident was to request another cd of my ct results, because, she said it would most likely get lost. I pleaded her for that please not to be the case with the biopsy slides, it was painful enough to get it the first time around.

The other interesting thing about hospitals, when you are in my situation is how they keep trying to avoid responsibility…I learned recently someone in my situation normally gets set up with a case manager, which is basically someone that does what I’m doing but that is familiar with all the red tape, and thus helps the patient navigate thru applications …Well the folks at  Kaiser claims it should be a case manager at USC, and USC said it should be at Kaiser because they diagnosed me…Oh Jesus!!! I’m just going to trust the saying that asking leads to Rome, and keep on knocking whatever doors I need.

In the meantime, when I’m not in a hospital, or making phone calls researching medical centers, I just tried to do what I would normally do… Well not all of it…This is actually kicking me to make some over due changes to try to help things along. I started wearing a Dr. Mercola Blue Tube headset, that my ultra health-cautious friend, Cathryn gave me. Supposedly it helps protect you about potential radiations that come from heavy use of cell phone…. and God knows I’m practically married to mine. Hey at least is a lot more comfy & with better audio than a blue tooth. More info at www.mercola.com - if anyone is interested.

I also put break to my weakness for fast foods, and started minimizing sugar in my diet. My cancer survivor, Manager, said that Sugar elimination is key !!! So there goes my love for Nica Libres, Mojitos...and Margaritas. I can do without the cake, but my dearest Flor de Canna, I’m sure missing you, missing you a lot.   

My sister Cecilia, who is pregnant with her first baby ;),  and I joke that right now we are pretty much following the same diet, as we are trying to wine down from coffee and have more green tea. The only thing, unlike her, I don’t have an amazing husband chef to cook the healthy dishes…  And not even Cancer can seem to cure my severe allergy for the kitchen. I would gladly clean the bathroom anytime instead of trying to cook. So this is probably the biggest change for me. My dear friend Susan, is trying to give me tips on recipes that even some like me –with no culinary gene – can do.  So yes, any really easy recipes and that are also quick, I’m all ears.  Otherwise is going to be mostly bananas and apples from now on…  

 

I know I don’t always get a chance to reply right away for all you that have reach out. But I do so appreciate the support you are showing me and my family…As well as your suggestions. Honestly it does make a big huge difference.

 Tomorrow I’ll be back at LAC-USC, not to see a doctor, but to be able to complete more necessary paper work… I’m aiming to get there by 6:00 am….It should be fun, for sure at least it is a huge mine fill for character research…Have a good week everyone

HEALTHCARE SHOULD BE RIGHT, NOT A PRIVELEDGE… BUT OF COURSE THERE IS ALWAYS HOPE

First of all Thank you, Thank you, Thank you….

For the kind words, and reach out of support. It really does touch my heart.  

So here are a bit of updates…and a link to something I wish you will all check out.

Every since my diagnosis my mom have been going to the “Santisimo” almost every day, and my Buddhist friends are chanting for me…Well, someone’s prayers were answered, because after anxiously waiting the results of all the additional ct scams of the head, neck and torso… I found out they came out clear!!! Yuu-hoo!! My type of Cancer, ACC (that’s the nickname I’m giving it) spreads through the blood and nerves, and the concern was that it would have taken over the glands in the neck or spread over a major organ like the Lung. Well my sweet pair of lungs are clear as a baby’s :))!! That piece of news when I got it, made my day!! If not my year!!

The not so great news that I just got at the end of the day today, is that it seems right now I won’t be able to continue at Kaiser, the hospital that was recently treating me, and need to pick up my files and seek treatment elsewhere. Yes - It is disappointing. Especially when I finally thought I found a good doctor, reachable, in whose hands I felt safe, and since just a few days earlier (even after the ct results) I received a much different type of call from their Medical Financial Program telling me that they would be extending the program and I should be able to complete Tumor Board and the radiation or chemotherapy there – which of course was an amazing great peace of mind.

Still I’m not very sure what changed, but Dr. Ditirro along with the head of the program were the ones that broke the news to me. As I immediately got on the phone to the alternative they refer me, and started hitting one bureaucracy after the other…my spirits began slowly to sink down…I realized I’m not yet quite as strong as I want to be.  External stressors do bring me down.     

I talked to a couple friends and went to see the Hangover 2 for cheers – that wasn’t doing the trick. (Sorry Hollywood, you need to become more original). So I decided to go back to a source of inspiration. Kimberly, who was the one that originally encourage me to start this blog, is an actress, baker and many other great things, who was diagnosed with a very aggressive type of breast cancer shortly after relocating from NY to LA. Not only did she beat it, she did it with grace and guts. We met back East and when I bumped into her 2yrs ago at a playwriting charity event, she was bold as an eagle, beautiful, joyful and with a formidable life force. I reach out to her the very first day I got diagnosed with cancer. If I was going to go thru this, I wanted, needed to know how she did it.

So tonight, I revisited her own blog, as I was sure in her path to recovery she must have also encountered stumbling blocks.  And there it was: “I have Limbs” is the title of one her blogs entry. It talks about a time, when pretty much like myself right now she found her mind spinning with questions like … auditioning?  personally I find myself asking should I try to get ft job or continue freelancing? Can I be searching if I need to go thru radiation? Would I have energy for these jobs?…my most recent one, how I can keep determinant if I’m not even sure where I’m going to be able to get treatment?

Well she wrote about Nick Vujicic, the in my opinion actually quite sexy ( alas of course he is married with kids) young man with No Legs and No Arms, just torso and a chicken cutlet as foot, who created value out of his situation and now motivates people all over the world, besides being a successful business entrepreneur who donates to schools and hospitals.

Check one of his many clips, in youtube, and let me know if it doesn’t put a smile in your face, it did in mine:  http://www.youtube.com/watch?v=6bL3GR4iAW0&feature=related

 Talk about perspective, vision and choices… I recommend checking it out next time you feel stuck or wanting to b*%ch about your life…He suggest to focus on what you have, not on what on you don’t….So instead I started asking myself what do I have? And oh I have so much, so much to be thankful: I have a pretty great family, really good friends such treasures, I too have my limbs, an innovative mind, a mouth to speak, guts to use it, and heart that doesn’t seem to know how the heck to give up.  

    

It is said that “Adversity gives birth to greatness. The greater challenges and difficulties we face the greater opportunity we have to grow”

Well, I tell you what: I’m expecting these obstacles are just the weights I need to sculpt a pretty formidable spirit to let me do all sort of great things in the future.

I’ll be working most of this weekend on acouple of freelance gigs…but come Monday I’ll pick up those records and do whatever it takes to get the care I need. The care one deserves. The care everyone should be able to have.  

Have a great weekend everyone…..Love, Liana

Gifts Come in Weird Packages

This is so new for me, I’m  Not a Blogger. But it was a strong suggestion by two good friends to do this as a way to communicate to the people that care, and perhaps benefit someone that at some point might go thru a similar experience. So here it is:

Last week, I found out that I have Cancer. Yes, The Big “C”. Perhaps is my Aquarius nature of being an original but turns out the type of Cancer I have is an extremely rare one too: Adenoid Cystic Carcinoma, which by its Greek roots, basically means tumor-like cancer of the glands, and the location of it (according to my doctor)  is an even more unusual one, the Middle Ear Canal. Dr. Ditirro, or Saint Ditirro, how I like to refer to him, told me yesterday that in his over 30 years of practice he has never seen a case like this.    

It started about 7 or so months ago, just before X-mas when I had the sensation of perpetual air in my ear, and of loosing a little bit of my hearing but no pain. Later we discovered it was a little ball of tissue covering over 90% of the ear canal, and every ENT doctor that got to inspected it, was pretty convinced it was something benign. One emergency doctor even diagnosed it as Swimmers Ear infection. Anyhow they needed it to removed it and  biopsy it but none thought it would be something serious… Well after three excruciatingly painful attempts to inject a two inch needle in my ear, with little or no anesthesia,  they finally decided to give me the good drugs and do the procedure under full sedation.

Thanks goodness for nurses that advocate for patients!!

Mine, took the form of a little guardian angel, named Daphne, who for my good fortune, was the person in charge of responding to my phone call, when my previous doctor would not, and for my sake decided to be in the room in their next attempt to do the procedure locally. It was thru her that I ended up in the much better hands of Saint Ditirro, who by the way is actually the head of the EMT Department, and not only a great doctor he plainly has the best patient care I have ever seen.

 

Well turns out that my seemly benign stubborn piece of tissue, that bled easily, was a malign tumor. Most of it was removed two weeks ago but  now more work needs to be done.

If you are wondering how I’m doing? Well... I’m braving it out, facing it head on and moving on with my life  -  which I realized is such precious thing that most just take for granted. The day I received the diagnosis, I had an audition and kept it.  The next day I went to Yoga with my good friend Cathryn (I’m also so not a yogi), and did a hands stand for the first time in my life…that was exhilarating…can wait to try again.

Is it scary to be my age, a freelancer in LA, sometimes scrambling to get by and be    diagnosed  with Cancer? Well…heck Yeah!! Especially with my family history, in which sadly quite a few members have been taken by one form or the other of this disease, but it is  precisely because of them, that I’m extremely determined to beat this. The Buck Has to Stop Here.

I won’t lie, I’m human and do have my moments.  Last Sunday I thought I was doing so well and all of the sudden it daunted me all the ramifications of the situation and gosh did I broke down uncontrollably in the middle of a public auditorium. Luckily I have really amazing, amazing friends that were right there to pick me up…

Please there is no need to act weird around me the next time you see me, or to call less or more than you normally would.  I’m NOT dying of this, I’m temporarily living with it. I promise to post here how things progress… because forgive me but it just gets a bit taxing to have to retell the story several times.  Repeating the diagnosis, test results, as my friend Kimberly said, makes me live in the disease…and not my life – thus the reason of the blog.

I realized it is important to be open about it and don’t hide it. That will just give more power to Cancer, and I’m so darn tired of the mystified terrified notion that there seems to be around this disease. Also hiding away, like you did something wrong, prevents you from getting the kind of support & encouragement that is so embraced in times like this. My doctor explained to me yesterday, this has nothing to do with a diet, lifestyle, or the fact I love the ocean. It just is. Cancer happens to kids, teenagers, and individuals of all ages that are active, seemly perfectly healthy people.

I do welcome healing thoughts, prayers, and any kind love you want to send my way. Funny jokes and stories are things I’m always happy to be on the receiving end.  Is summer in LA, my all time favorite season!!! So if you are around and want to go for hike or near the beach do let me know!

If you want to write or leave comment I guess you can do it here (this blog thing  still so Alien to me) or send me an email, or letter…always very happy to hear what my friends are up to…

Wishing everyone a joyful summer and hoping you are making good use of your time, 

much peace and love. --- Liana