Down The Rollercoaster - is a much better view!

My mask for radiation. They asked is I wanted to keep it. Huh, it was lovely profile, but now way that thing is going to Recycling! 

So yesterday I had my latest appointment. Is one of several follow ups I need to have with the ENT folks now that the Radiation treatments has been completed to make sure the ear is healing nicely and I’m doing ok. Its funny it went pretty smooth. I know the drill, I know the receptionists, almost all of the nurses, and of course the doctors. The one doing the follow up is the same chief resident that operated on me months ago.   I was calm collected, and seeing a brand new patient, asking question, looking lost  reminded me  how I was the first day I got there:  Nervous, a bit scared but determined. And oh so utterly frustrated when they told me right before a doctor  could see me I had to go different dept. & correct the misspelling of one letter of my last name.  That after a week before had been bounce around from ER to all over hospital from 9am -7pm just to get that appointment.  Public health care system is no joke, but  I have to say it works. Nurses and doctors and even bitchy receptionist start treating you much nicely once you become a person and not number to them.

Many times I have wonder what was worse being diagnosed with Cancer or the bureaucracy you  have to go thru to deal with it.  Anyway glad to report the worst is behind now. The last two weeks of radiation were no fun, but I manage to work thru to my last my day of treatments. Although I had to be chauffeur around or/and be  very VERY  drugged on anti nauseas medication to sustain  shooting, plus  teaching right after  radiation.  I’ll be surprise if I don’t get cavities from all the many Preggy Pops candies I have been eating. A friend point blank ask me if  there was any “pot” in those candies, but no I just take them cause sometimes is the only thing that works.   

The doctor explained the other day that getting radiation is like riding rollercoaster you go up, up, up and you need to still be up before it can finally go down and then be still. “The first couple of weeks you only have few hundred grays by the time you are done you have over 5000  grays of radiation  in your body, in your case the head”.  No wonder I felt like crap. Apparently radiation continues to work, killing cells in your body even after is over, thus the latent dizziness and fatigue.

The last day of treatment I say goodbye to Charlie and Shirley, and thank them for taking such good care of me. We had become friends by the time it was over. Charlie always nagged me about the results of my auditions (like if I had a choice in the matter) and Shirley was always so encouraging. Right to the end when it was getting pretty bad, and I told her I could have never go thru chemo (which I hear is much worse). She would tell me about her husband who has been battling colon cancer for the past four years and still goes thru it. “You have some bad days, but it passes and then you go on”. She is retiring this month. I was one of the last patients she treated. So she gave me a huge a hug, that last day because she won’t there when I go back for the oncologist follow up. I’m a bit sad but happy for her.

Anyhow, if you guys are wondering I’m doing really GOOD. The few days right after treatments were over were a bit rough, but I can say I started my descent from the rollercoaster. Nauseas are still there but I can eat, headaches are less intense and not as constant. Lot of hair did fall down, but since I had quite a mop to start with you can’t hardly notice. Skin  did went black at the end but is now going back to normal…Thank you all natural Aloe it does wonders for burns…and most importantly I didn’t went deaf. It was a 90% chance I would loose hearing on my right ear from 6 weeks radiation treatment. But after yesterday check up it seems pretty promising. Although they are waiting a while before the official hearing test, since is still too sensitive to put any ear plugs in the ear, it seems my little cochlea is one of those stubborn 10% that won’t be going out of business just yet.

Technically I won’t be declared on remission until the next set of screenings comes and I’m clear…which might not happen until next year.  But I’m happy, very happy. I even got more good news, Dr.Mazhar told me he doesn’t see a reason why hopefully by next summer I’ll be more than ready to dive again.  Yuppie Yay!!  They say it might take up to a couple of months for things to get back to normal and dizziness & fatigue to dissipate for good. Till then, I’ll be eating the candies, and keeping busy, which seem to be best antidote to any side effects.  Might sound cuckoo but I seem to forget about symptoms when I’m engaged. So I foresee many walks, jogs & solving puzzles in the near future, and trust the universe continue sending me more work.

As you can see, this thanksgiving I really had lots to be thankful for, and I truly hope you did too…

Have a great holiday season and CELEBRATE!!!

Closing in the final stretch

My favorite thing about writing is that you can always turn the page, and start a new with a blank slate…

So here is what you guys have missed: so far I’m in the middle of my 5^th week of radiation – that is 9 more sessions to go. Way over ½ way hump – can you tell I’m counting?

the  destination M-F

The first 3 1/2 wks minus the occasional headaches were a walk in the park, but these last few do have started to wear me off. Yes my hair is thinning, yes I get bit disoriented and tired but what I hate the most is the morning sickness (I get them morning, afternoon, and evenings). I honestly couldn’t understand what heck ear and head radiation had to do with the stomach – apparently this is an uncommon side effect – but the doctor explained that radiation in the ear nerves causes motion sickness which is causing the nauseas…Lucky for me I have pregnant friends that have been cool at advising what works with those. Prego props (giving to me by one of them) are such a life saver! They are these little citric candies/ lollipops designed for pregnant ladies, and I literally eat them like a kid eats sweets in Halloween. Is the only thing that seems to work for me They are way more efficient that the meds the doctors gave me and without the side effect of leaving all drowsy & clumpsy.

By now, I’m on first name basis with pretty much everyone in the Radio-oncology and ENT departments…Not shabby for being in a large hospital, but I guess that is the perk of being a frequent flyer like me. Charlie and Shirley are my technicians for radiation, and they are a riot, sweet caring and flexible when I have needed to switch my appointment. I joked with them that I always get a  Snow-White feeling when they removed the screwed-in mask at the end of treatment, lower me for my claustrophobic chamber and I can breathe again... 

My favorite fellow patient (the one in the bickering couple) finished his treatments two weeks ago, so the radiation lobby is a bit quieter and boring now. I miss their infusing optimistic spirit.  

Other than that things are good. I have a new roommate (my mom) who came back to help thru radiation…although at this point I can’t stomach eating any of her yummy Nica foods…My tastes buds have gone awry, fruits & juices is all I crave. My face has not change color, so there went my plan of being a burned person for Halloween…And lately I’ve being having to do a lot math/algebra problems with my students (I hope that might help counteract all the frontal lobe radiation I’m getting). Oooh, oh and a good day when I wasn’t dizzy I even made it back to the dance studio …for a bit  ambitious choreography class. That was fun...I need more of those.

Thank you so much for those that have stopped by with soup (Angela that was simply delish!!)  chauffered me around when needed, or just showed support– honestly it helps a bunch….

     

    Now I have to go back again to the big blue (that is what I called the big machine where I get the radiation treatment) so then it will be only 8 more sessions to go ;-)

Team HOPE...In Good Company

Our Logo

This is one is all about some of my  fellow "team mates" ....I thought they deserved their own post. 

After I left my first meeting at the Radiation Oncology Dept, I cried on my way home because for the first time since this whole ordeal started I actually felt like a “Cancer Patient”. All of us there had it, and the information from the doctors with all the ifs and lack of certainty was just too much. The fellow ladies in the waiting room were all comparing notes on their treatments. One even showed me the skin discolorations in her chest (pretty darn black) “You get roasted like a chicken” another one said…But the good news though is that I’m actually in pretty good company. Most of the cancer patients I’ve met have the best sense of humor, so much courage… full of good advice..

Here are a few of them:

1)      Don’t be put off treatments, the sooner you start, the sooner you will end. (I think this is applicable to any unpleasant situation or actions we are trying to avoid in life)

2)       On my concern of darkening of the skin: should be last of your worries… when you are dealing with your life.

3)      Surround yourself only with positive upbeat people – avoid drama. (true not just for Cancer)

4)       If you they say "no" to you, ask some one else, until you get the answer you need.

5)      Take things one day at the time, one thing at time, and don’t forget to laugh. On feeling overwhelmed with too many things on your plate and not knowing where to start.    

This last one, sounds so simple, yet at least for me is a slow one to learn. 

The Team Motto

Almost all of them are at least a good 20 years older, some of them with much more serious conditions. There was couple on my second visit, he has stage 4 brain cancer – a pretty dismal prognosis. And we were making fun, comparing our scars. Is gotten to the point the wife has to drive him & help him with everything. I never seem a couple bicker so much, and at same time show that much love for each other. There was another lady, that after undergoing treatments all week, she told me goes and work 8-10 hrs days over the weekend cleaning at a hotel. She said that it is not just for the money, (she could have easily gone on disability) it makes her feel productive. One of my favorites, was this little 70 something old lady that came up literally dancing out of the radiation room with her cane, announcing she was ready to go home and lay up butt naked in her bed… to put on the moisturizing cream up her tushy. (She is fighting colon cancer…) and she will pray her grandson won’t walk in on her like he did last time.

Oooh, seeing them, hearing them, makes me wonder what good bits of wisdom I’ll be able to develop from all this… that I could pass on to someone else. No idea…yet, but they are marinating…I’ll keep you posted.

PLAYING THE ODDS

I’ve come to realize I put off writing in the blog because it reminds me that I’m still dealing with this...And a huge, huge part of me so wants to forget even if it  is only temporally about it, although it is taking a good chunk of my daily life. I go to medical appointments at least twice a week if not more…And pretty soon (tomorrow) it will be daily.  

Like in Poker, gotta Know your Odds 

To win with the hand you've been dealt 

So yupe, we are going thru with radiation. Felt a bit like playing poker. It took 3 mtgs with oncologists, 2 consultations with surgeons, about a week worth of sleepless nights, and, not easy to admit, many tearing up sessions with my favorite therapist – my faithful little black Nissan versa – to convinced me. (Yeah, I have the most amazing sessions, full of  a-ha moments in the highway)

Basically sparing you all the medical jungle bungle…the odds of nipping this in the bud & giving me better chances of preventing a nasty relapse by going thru radiation by far out weight the probabilities of the scary long term side effects & the casualties in the short term (skin, some hair, hearing etc...) Like the good card player I am, I like to play the odds, and play to win. So although nothing is certain, if I can do something to help prevent more surgeries or more compromising treatments  in the future, I want to do it.

So we are all set: the plan have been designed, I got my own personal “Phantom of the Opera” mask for the sessions, and a few days ago we did the final fitting and simulation at the big machine…Is a bit claustrophobic but it doesn’t last too long…

 I started enlisting a couple friends from when I might need help with things, (it wasn’t as hard as I thought it will)  and I did signed up for the American Cancer Society program that have volunteers that can drive you to treatments, just in case.

 

My main concern, is that call me “Loca”, but I want to keep on working, and living life as usual, as much as possible. According to the doctors is doable. The technician said that although it might seem contradictory, patients who try to keep up with their activities usually experience less fatigue, and fight off the side effects better…As a freelancer I don’t  have the luxury of  medical leave - so not working is not really a choice I can afford. But also knowing that I juggle 2 to 4 jobs at time, driving all over town in LA, I have resigned myself that I might have to scale down…The doctors don’t know yet if my coordination/balance might be compromised during treatments– thus the concern with driving in hectic traffic LA.

My dad told me, that like a former New Yorker, I'm used to my life being a constant “corre-corre” and that it might be too optimistic of me to expect to keep up the same pace as treatment progress. I don’t know why he keeps blaming one of my favorite cities for what I think is genetics…Anyway, too optimistic, hum…maybe, ....probably. But heck, I’m sure going to try. Like I just heard in a movie: “You don’t know how far you can go, unless you run”  

To Radio Or Not To Radio??

I know a lot of you been asking and wondering but recovery from surgery is going well. On my last post – op visit, both wounds in arm and in ear are healing nicely. BTW Silicone based strips do wonders for scars, if you ever need to use them.

The only thing is the occasional energy low – that makes me feel like a diabetic without sugar.  I had to keep the Styrofoam on my ear for 2 more weeks, so the skin grass really fused. – But most of it came off yesterday!!! Yuppie!!!

I did miss out on a booking and a couple of auditions right after surgery. But actually since late last week I have tried to be back in the swing of things, and just get very creative at camouflaging my post surgery evidence, so far so good. Amazing what the right wardrove & hairdo can hide... I still cannot do any heavy lifting, weights training or yoga for a month :( , nothing that will put strain on my arm. But I do try at least to go for short stroll walks when the sun goes down.  

Mom left a few days after the post-op …After a month of airplane jumping in the US, the poor thing was so ready to go back home to dad, only to be the next day back on the phone drilling me with specific instructions of what I need and don’t need to do. Oh Moms..! Although, we both say that besides our name we have very little in common, it was great having her around. Besides all her super-duper nursing help, it gave us the rare opportunity to be just the two of us and really catch up. I used to joke with her that getting knocked up would be  the only way to get her to visit  LA, she is so not a fan of large cities but would - like a good Latin mom - do just about anything for future grandkids…However I guess the big C did the trick for me this time. 

The not so fun part is that I met with the radiologist oncologist , and they (the team of doctors) are strongly inclining for radiation treatment, in spite of the good success of the surgery. We spent over an hour going over the benefits, possible radio options, and long, long, LONG list of side effects.  Not an easy decision. It will be prudent to do it, but because of my age, radio could also bring all sort stuff (including other types of cancer) in the future - iacks  The doctors actually want to do more research too…So we are meeting nxt week for a scan fitting and to review options. At this point they are advising 5-6 weeks radio,  five sessions Mon-Fri each week. Ufff!!! Just when I thought my hospital visiting days might be over – on loan from my pal Al Pacino- they pulled me back in!!!

I’ll consult with my surgeons too and see what they think. It is hard when you have rare cancer because neither patients nor doctors have much to compare with. And although I have tried getting a peer-match thru a couple of Cancer support organizations, there are no results yet. My own Big C survivor friends said reactions to Radio really do vary body to body and that there are ways to fight the side effects...Like in the meantime besides busting up my immune system, I was actually told (For The First Time Ever) I should put on weight!! According to the R.N, at 96 lbs I might be too skinny for treatment. Huh!!! Soooo, by the way, invitations to yummy healthy food are welcome (wink, wink ;-p) but recipe suggestions will do just as well. And YES, believe it or not, I’m actually cooking – well at least my version of it (see below).

Enjoy was left of the summer!  It is nice being able to share this ride with y’all. Somehow it does makes things little bit easier.

Wishing u lots fun & giggles this holiday weekend.…xoxox  L

PS..

A few of my kitchen experiments:

mex-chopped salad, Li's version

Thanks S. for recipe. I made this salad for a dinner w/ friends, and  but of course I went and modified a few things...lots of tumeric!! However bowl  was emtpy by end of evening! 

Broccolli/Apple Shake 

Broccoli, one of best anticarcigenous/antioxidant agents - just can't find what the heck to combine with so it won't taste like drinking grass. Hum...i'll try Mango nxt time.

Greetings from post op

Gracias! I was very moved for the amount of good wishes I received right before surgery. Even my former doctor at Kaiser called. And I just want to say thank you very much for all love and words of encouragements everyone sent our way and share that the prayers and good vibe/thoughts must have work because according to Dr. Mazhar the surgery went pretty smooth (for all those cynics out there that think those things don’t work). 

Pre-surgery

They were able to remove all the traces of the tumor and got clean margins – meaning that the extent of the cut went until they were able to find healthy tissue. Dr. Mazhar along with a pathologist examined the exposed ear, and the cancer had not spread to the bone or other head internal organs!! So there was no need for a mastoid procedure (when they scratch or cut the otic bone) or having to remove the ear drum. Also no facial or taste nerves were damaged. Yay!!!

After Surgery - thank u Long Hair for the camuflage!

I was out of the OR around 12:30, but was released until much later  so they could keep an eye on the internal bleeding of the ear. I must admit, if this was supposed to be a not too invasive surgery, I really don’t wanna to know what a more aggressive would have been like. Your body does feel pretty crappy right afterwards. I developed a pretty bad sore throat from all the tubing making it painful to eat or talk, which is why I have been mostly texting as oppose to get on the phone.  My ear currently does looks like a little Dumbo (nothing that long hair won’t cover), and I have pretty big scar under my arm from where they removed the skin to use in my ear. I already tried to start researching what can I do to minimize it, and if anyone has any tips for this please, please do share!

But other than that I’m  doing fairly well. The small fever I had post surgery is gone and there is hardly any pain left. I actually stopped taking pain meds yesterday, and the bleeding and swelling has diminished as well.

Its so nice have to my super nurse, mom around; she cooks, helps with the dressings, overall doesn’t let me do much. Not that I could  fight her much any way, the days right after surgery, much unlike me,  all that my body seemed to want to do was to sleep. I’ll would be reading and  fall sleep, talking to my mother and I  fall sleep, trying to work in the computer and fall sleep. But I'm glad to report the Sleeping Beauty syndrome is fading away. 

According to the doctor I needed to stay put for about 3 days and mild activity for at least a week or two, to prevent extending the stitches and let the skin grass fuse well with bone. So I’ve been trying to be a good patient, let my body heal. I spend most of my day reading, catching old reruns of Ally McBeal, watering my wound with drops. Just like regular grass, skin grass need to be kept moist to attach. Funny huh?

My post-op appointment is next Monday, and hopefully they will already have the results of the second biopsy, which will determine what if any will be the next steps to take.

 In the mean time me and my mother are experimenting with healthy recipes. She is trying to teach me how to cook, and I try teach to her what I have learned so far about combinations of vegetables that are particularly inmune system booster. But for now I have to go, its time for my other combination of meds,  and I told my mom, we will watching the new movie of el papasito Gael Garcia Bernal.

But again mil gracias for all the support. Xoxox  - L..

Its Surgery Time!!! At Last!!!

Ok. This is it. Tomorrow ultra early in the morning I go into surgery. By 7:30 am PET. I'll should  be already pretty knocked with morphine :)). And yes the whole cutting, and scaring is a tad unnerving  but I'm SO MORE THAN READY to get it over with (even if I have last minute call back schedule).

Taken in one of my many hospital visits. At least the view is great

I spent the whole past month in and out of the hospital getting all sorts  tests done, blood work, EKG cardio tests, scans, audio tests,  x-rays and an over an hour long meeting at the anesthesiology dept. Even my teeth needed to be checked. For someone that have gone thru surgery  a few other times in the past, I’m surprised how meticulous they are but I guess that is what they needed to do.

The surgery will not be as invasive. The paraotid gland (the big gland right in front of the ear) which they originally thought they will be needing to cut, after studying the scans looks healthy and it was decided to live it alone which will save me a big scar across my cheek  - Heck yay!!!!

The surgery will consist of a sleeve recession, which basically means they will cut from the back of the ear and remove the skin of the ear canal along with glands and nerves like an old sock, and replace it with skin grass from another part of my body.

The tricky part comes, and why they don’t know yet until they open is, if they will have to cut part of the canal’s bone or how close they will need to get to the ear drum. In either case Dr. Mazhar told me, if they do they will rebuild them to restore my hearing. Ear drums get rebuild with a tiny part of your brain, amazing!

 

There is also a small but still present risk of touching the facial nerve (which could cause partial face paralysis) and of course the risk of infection.

The two Lianas at top of LA yesterday. 

If all goes well, I’ll be in and out of the hospital in a day and get to recover at home.My mom, arrived yesterday to LA, so I have a top of the art personal nurse. And my aunt and uncle were very kind to drive her back and be here to help her translate the day of the surgery. So nice!

All ready that is it. Thank so very much for the good thoughts, and positive energy everyone is sending. It helps!!! My own personal prayer is that doctors will be wise enough to just do exactly as much they need to do and for a hopefully trouble free, not too painful recovery to get back on my feet in no time.  Bed ridden is so no my style.

Love, L…