Monday, September 20, 2010

Cancer Treatment Centers of America - Evaluation

Let me get you all caught up...
As of the end of July, my oncologist wanted me back on chemo.  Chemo that I've already previously used.  Chemo I know will not cure me.  My doctor is convinced it will, at least, extend my life.  I'm convinced that it will just increase toxicity in my body.  I felt my body was very tired of chemo and I needed a break.  I just could not get myself to go back to chemo.  My doctor warned me that if I delay too long, the decision will be made for me.  I knew this.  I needed treatment.  But I did not want chemo I've used before.
I read Suzanne Sommer's book - Knockout - where she interviewed doctors winning the fight against cancer without chemo.  I was looking to go to the Burzynski clinic in Houston, Texas.  The science looked most promising.  The problem was cost.  Even if I had worked full time through the treatments, I still could not afford to go.  Alternative treatments are not covered by insurance.  After the drain of my China trip, there was no way I could afford this.
Other doctors in the book talked a lot about nutrition.  So I drastically changed my diet.  No gluten, no flour, no sugar, no processed food, all organic.  I went all the way.  My gut was not ready for that.  I lost even more weight.  Gas was a big problem.  I was starving but cold not eat.  At this point, nothing would come down properly.
I also noticed that even if I was working from home, the work was wiping me out.  So, I decided to go on disability so I can concentrate on healing.  I want to build myself up again to be strong enough to work and live.  I was worn out.  I knew, I could not blame chemo anymore.
I noticed the TV ad for Cancer Treatment Centers of America.  I actually had called them 2 years ago.  Since I was able to work through my chemo at the time, I did not want to commit to the 3 hour commute if I moved my treatments to Philladelphia.  Since, I'm on disability now, I actually could do it.  What's interesting about this place is that they do Standard of Care plus alternative treatments.  You will have a team of oncologists, internists, naturapathic, homeopathic, nutritionists and mind and body energy medicine.  They do it all.  And it's covered by my insurance!  They'll even pay for travel expenses!  I told the representative that I had my heart set on going to Houston but he said since CTCA is not that much of a financial hit, I should at least consider their evaluation.  If I still want to pony up for Houston, I can compare their services and make a much better decision.  That made a lot of good sense to me.  So I scheduled my evaluation for the week after Labor Day weekend.
We spent Labor Day in Atlantic City, NJ with family.  That weekend, swallowing problems started.  I could not swallow my pain pill Percocet.  I was writhing in pain all weekend.  We started to crush the pills and mix them in yougurt.  Even upping the dosage to 4x a day, I was still in significant pain.  Remember that I had been slowly loosing weight due to change in diet so the pain made it worse.  I was dehydrated and malnourished and writhing in pain.  I could not walk anymore.  That's how I walked in to the CTCA on Sept 7.
The first day, I met the internist first and they took tests.  Got blood, took measurements... etc.  I weighed 95 lbs.  My internist assured me that they have other options for me.  I need not re-use chemo.  That gave me hope.  I was actually excited.  He told me that he understood my stance on chemo.  Unfortunately, since there is lymphatic involvement (cancer in the lymph nodes), my cancer is systemic.  The only known way to reach systemic cancer is through chemo.  That will still be a major part of the plan.  But since they're giving me new stuff (which I see as options and hope), I'm ok with it.  Plus, their other treatment methods (alternative) will keep my body strong through the treatments.
Of course they want to do baseline testing so they can make the best recommendations possible.  They did a PET scan and an MRI of the brain.  The natural progression of lung cancer is to the brain so they want to check there.  They were very surprised that my doctor never checked that since my diagnosis 4 years ago.  I'm way over due.
The next day I talked to pain management.  She took me off Percocet since it contains acetomenophen.  Since I have liver issues (tumors), she did not to tax the liver more than needed.  She gave me Fentanyl lolipops to control the pain as needed.  The idea is to suck on the pops when I hurt.  Well, after having finished a pop, I went to sleep and woke up with the most unbearable pain.  So to reduce the incidence of those spikes, I sucked on a lolipop for the next 24 hours.  Not good for my teeth.
I also talked to a nutritionist who said I just needed to eat.  So I laid off the diet and just concentrating on injesting calories for the moment.  We also talked to supplements but she knew I was facing bigger problems at the moment.
I saw Occupational and Physical therapy.  They suggested the Re-Builder therapy for my neuropathy.  Theory is, they send electrical impulses to create new sensory paths in the hands and feet so I don't need to use the damaged ones.  They also talked of Massage Therapy both for me and my Mom (my Caregiver).  They take care of me and my family.
Then I needed to do the PET scan and MRI.  They needed an IV line.  In the best of circumstances, I'm a difficult stick.  More so having been dehydrated and malnourished.  It wasn't pretty.  I've still got the bruises after 2 weeks.
On the third day which was the last day of evaluation, I went to see my oncologist ready to hear his plan.  He looks at me and says I can't let you go in this condition you are in.  Please consider staying in the hospital.  We'll take care of you.  So I stayed and was glad to do so.  Thank goodness we had called my Uncle (Tito Leo) just in time.  He was about to leave from VA to pick us up.  (Thank you so much!!!!  Love you, Tito Leo!!) 
More news that day, they found tumors in the brain from the MRI.  If I was not in such bad shape, they would have started radiation that day.  That was a shocker.  Quite devastating, actually.  Brain mets?  Radiation?  Didn't I set out to find cures that were specifically NOT chemo and radiation?  I was scared out of my wits.  I called Tito Hector (hubby's uncle - internist from NJ).  He drove to the hospital to give love and support.
I remember my Dad going through radiation.  I saw the seizure that killed him.  That was playing in my head.  Tito Hec said - but he had prostate cancer.  He opted a different route of treatment.  That was in Manila more than 13 years ago.  There's just no comparison.  The technology I had in my fingertips is totally different now.  He pointed out my pain pump.  That's state of the art stuff.  They care enough to measure your need for pain meds.  The pump delivers a constant flow of pain medication.  If I needed more, all I needed to do was press a button.  He said a lot more things.  How impressed he was in the hospital.  The extra care they take.  He was right.  I'm very fortunate to be here.  Then somehow, when he left, he had Mom and I rolling on the floor laughing our heads off over funny medical stories.  (Love you, Tito Hec!!!)
The next day, Tita Zit (my dad's only sister) flew in from Northern California.  It was so nice to have her there.  I really felt my Dad's spirit around.  I knew that even in the worst of circumstances, I am not alone.  God is with me in the people around me and the people who send their love. 

Thursday, July 29, 2010

keep on swimming...

I was admitted to he hospital from Sunday July 18 to Wednesday July 21.

It actually started the Friday (Jul 16) before. I was having trouble breathing. More than usual. My hubby wanted to take me to the emergency room already but I didn't want to go to the hospital in Orlando. I was ok as long as I didn't move. I got out of breath really fast. As in 5 minutes of walking would get me panting. When just that Monday I had walked at least an hour before I got out of breath.

We arrived home from Florida Saturday evening. I called my doctor Sunday after church and told her I had this trouble breathing. So she had me go to the ER.

They started me on antibiotics. They suspected pneumonia. After a couple of days and numerous tests, it actually wasn't pneumonia. They said that the cancer had spread all over the right lung only the left lung is functioning. So they took me off the antibiotic. My doctor has me on iron and folic acid supplements. She wants me back on chemo...

They say the reason why I've lost my voice is because something (probably tumors) is pressing on nerves that control the vocal chords. These nerves start at the lungs.

Since then, I've been working from home to minimize physical activity. My 2 moms are here to help take care of both me and Burke. It's all working out.

I've also had to start on pain medication. Percocet 3x a day. I can't avoid it anymore.

I told my cousin all this over the phone and she asked me how I felt about it... It is what it is. I'm still alive so I still have hope. I'm not going to live my life in fear and depression. I have too much to live for. So I live (quite happily, I might add).

Sunday, July 18, 2010

DisneyWorld Adventure

About 3 or 4 weeks ago, I was struggling to get a PET scan approved. I was also worried about what the scan would say. The CT scan was not so good. This was all I could think about. I started to think - I'm not doing any treatments at the moment. I was relatively ok. I could walk. Burke's turning 8 which is a perfect age to bring her to DisneyWorld. Financially, it was a stretch but still possible. Instead of worrying, I planned our Disney trip.

We were at DisneyWorld July 10 - 17. We had the best time. We stayed at one of the Disney Resorts. It was pricey but the perks were worth it!

July 11 was Burke's 8th birthday. We went to church first at 9:30am. Then off to the Magic Kingdom by 11am. Our biggest surprise for her was dinner with the princesses at Cinderella's castle! First, we got our picture taken with Cinderella. It was like you were really talking to her. I had fun meeting her. We had a wonderful dinner and Snow White, Belle, Ariel and Princess Aurora all stopped by the table so we can take more pictures. During dessert, they did the fireworks and we could all see it from the window. We couldn't help thinking, this is only day 1!!! We were at the park at least until midnight (Magic Hours - resort perk). We were up to our eyeballs in Disney Magic!

We visited all 4 parks - Animal Kingdom, Epcot & Hollywood Studios. We had a blast!!! The dining plan was so worth it.

At EPCOT, we had lunch with princesses again (Akershus - I actually liked this better). Burke did the Kim Possible Adventure where she got a "cell phone" that she got clues from. It's like a treasure hunt. She loved it.

At Animal Kingdom, we liked the ride with the Yeti. Burke liked that too. She's turning out to be a coaster freak like her parents. I danced at the street party in the Africa section. (Herve, now I know why you love it there!) The Safari ride was awesome as well.

We took a day-off. Wednesday, we stayed in the hotel room to rest. Burke and I swam in the pool. We watched Cirque Du Soleil at Downtown Disney that night. That was an experience in itself. My jaw hit the floor on the first stunt. I watched the whole show with my mouth open. They have the biggest Disney merchandise store Ive ever seen in Downtown Disney. Burke and I checked it out. At first we couldn't find the girls section so we asked someone. It was in the back. And it's called the "Princess Section". OMG!!!

It rained the day we went to Hollywood Studios. Bummer. Some tours and attractions were closed. We didn't get to see Fantasmic (2 hour line!!!). So, we didn't enjoy this as much as the the other parks. Tower of Terror was our favorite ride in this park!!!

We did a Luau at the Polynesian. Dinner and a show. Loved it!

To sum up, we had an awesome time. I'm so glad I got to share Burke's first time to Disney with her. I had only been to Disneyland before. All of us just loved it - except maybe for Mike's toes which had mega blisters. Although he says they were worth it.

Oh, I'd like to thank all those who helped make this trip possible. Thank you so much for the unexpected blessings!

Tuesday, July 06, 2010

Why I LOVE The Last Airbender

I did go out to see The Last Airbender last Saturday with the family. It was awesome! Go watch it. Don't listen to other reviews (except this one, of course!).

I've been trying to figure out why I love Airbender so much. It's based on a cartoon series by NickToons (Avatar: The Last Airbender). Even if they've had to really shorten Book 1, all important elements are present and I can't wait to see the next 2 Books brought to live-action.

So, what's so great about it? First of all - the concept of "bending". There are 4 nations - Air, Water, Earth and Fire. Some talented citizens of each nation has the ability to control their native element with martial arts. Absolutely awesome to behold! Watch the sequence where Aang (and the gang) free the Earthbenders against the Fire nation troops. All 4 bending elements are used.

In every generation, there is born an Avatar that can control all elements. He keeps balance in the world. The Last Airbender is Aang's story.

The truth is, I'm a big fan of the cartoon and it spills over to the movie. If I had not seen the cartoon, I'm not sure if I'd love the movie so much. I love the cartoon so much because of the cosmic truths told in the story. There's a lot of Eastern Mysticism around the story but the depth of the stories and the philosophy around it is amazing.

What's missing in the movie?
Aang's childhood. In the cartoon, he's a silly kid. He laughs a lot and loves games. He did not want the responsibility of being the Avatar get in the way of that. And it was a big part of his development into the Avatar.

Sokka. He was such a big personality in the cartoon. Since they removed the comedy, it seemed they removed Sokka as well.

Music. The cartoon always had ambient music and sound that was distinct to the series / book.

They changed the pronunciation of some characters names. Aang, Iroh... It was weird.

I hope the other Airbender movies get made and incorporate more Cosmic Truths. I hope it touches hearts like the cartoon did mine.

Saturday, June 26, 2010

Sheer Positivity

I'm actually doing quite well after my first round of chemo.  Single agent - Taxotere.  Since it is on it's own, there's hardly any side effects.  I didn't even have any nausea brought on by fear. 
After a LOT of prayer and surrenderring my life to the Lord, I'm at a good place.  He's given me comfort and peace. 
Yesterday was actually an awesome day.  I was surrounded with love.  I have to say thanks to Pat, Linda and Lisa.  My friends who went out of their way to spend time with me yesterday.  Especially Pat who sat with me through chemo.  I came to such realizations yesterday.  I was telling her thet I usually go through chemo alone and it never let it bother me.  I know I can ask any of my great friends to sit with me there and they would come in a heartbeat.  But it always bothered me to impose.  She was telling me how she enjoyed our time together and how much she wanted to be there for me.  That just touched me to the core. It took the whole day but our time spent together just got more special every time I looked back on it. I don't have to go through this alone?  I never expected this relief.  Like I said, I never let it bother me but it has. 
It's not like I've never had someone sit with me before.  (Sorry but I just can't recall at the moment who.  Please remind me if you remember.  This does not count my family - more on that later.)  But at this stage of the game, I needed it more than I thought.  My spirit is tired and the physical company rejuvenates me.  So, Pat, I'm so glad you insisted on being there.
Why do I discount my family?  That's my hubby, my daughter, Mom, brothers, in-laws, aunts, uncles, cousins...  These are the people I live for - especially my immediate family.  I can not leave them.  I can't even think about it without breaking down.  I so desperately want to stay because of them.  They are the reason I live.  I'm not scared of death.  I'm scared of leaving such a void in my family.  I have been so blessed.  To those whom much is given, much is expected.  If this is the cross I must bear everyday, they make it all worthwhile.  But when I'm at chemo, I'm at my most vulnerable.  Many fears come up.  The desperation I feel makes it difficult to be strong.  I seems that having a friend with me does not bring up this desperation.
It also helped that there's no side effects bothering me this time.  Thank God.  It's easier to be spiritually strong when I'm not physically miserable.  He truly does provide me with all I need.
When Pat took me home, she had to go to work.  So, she got me lunch and made sure I was settled.  She asked if I was going to be alone, I said no.  A friend was coming by after work even if hadn't asked Lisa yet - I knew she'd come.  Even better was when around 3pm, Linda calls and comes by to visit for a while.  She stayed with me until Lisa got here.
I'm not usually alone in the house.  It's just that this treatment wasn't planned until the day before.  My Mom-in-law and Burke had gone out of town for a couple of days.  They'll be back later.  So will my Mom actually.  This summer, Burke will have 2 grandmas around to spoil her.
I loved how dinner played out last night.  Lisa and I have a great time just hanging out.  We were just literally sitting on the couch laughing our patooties off.  I was showing her my wedding album.  She asked where I had my reception.  The cowboys with meat on sticks made her curious.  I'm like, "You've never been to a churascharria?  Brazilian steakhouse?".  I immediately call Kel and tell him we're taking Lisa to Texas de Brazil.  I had not eaten that much in a long time.  I'm not sure if it's the sterroids kicking in or what but I had an appetite.  I must have gained at least 3 pounds.  It was an insane amount of meat.  It was yummy!!!!!!!!!  We were all still laughing our patooties off at the restaurant.  I'm not sure if that helped our digestion but it sure was fun!
So I had a really good day yesterday.  I look forward to the future.  God is with me.  He'll help me through this.  Bring it on!
Thanks to everyone who is praying for me and sending wonderful thoughts and positive vibes.  It helps me more than you know.  If healing was a democratic thing, I would have been healed a long time ago.  This also touches me and strengthens my spirit. 
Some people have asked whether China was a waste.  I can not indulge in regret since it weakens my spirit.  I acknowledge that it took a lot of resources and it did not bring the outcome we all so desperately wanted.  But, I met a lot of good people there.  The doctors really did give it their best shot.  I'm still waiting to hear from them.  I want to know what they recommend after seeing my PET scans.  Although I don't think I'm going back since it is really expensive to travel there.  If it's gonna be chemo, I'll just get that here where my insurance will pay for it.
I'm currently reading a really good book.  Defying Gravity by Caroline Myss.  I'm not done yet but the one truth that resonates in my soul from his book is that not all pain is bad.  Sometimes, we need the pain and illness to transform into the beings we are meant to be.

Thursday, June 24, 2010

PET scan - 6/15/2010 Official Results

Unfortunately, it's bad.  I'm worse off in every measureble way.  Number of tumors, size and activity.  At this point, the numbers don't even seem to matter.
So, I start on chemo again tomorrow.  Taxotere.  One of the first drugs I used.  My doctor is taking me off of platinum.  She doesn't think my kidneys can take any more being on them for 4 years.
I pray for the grace of endurance.  I know that this is not over yet.  I know that the news is very disappointing but I don't want to give in to fear.  I cling to my faith and surround myself with hope and love.  As I know you all are doing.  (Much appreciated.)

Monday, June 07, 2010

CT scan - June 2, 2010

I've been quiet since I left China.  I was on vacation.  Yes, I took a vacation from my cancer.  I wasn't on chemo so aside from slight fatigue, I was (and am still) feeling great.  I lost a lot of weight so I've been enjoying shopping for size 4 clothes.
There really wasn't anything to report until I got the scan results.  I really need a PET scan but my insurance will not approve a PET scan unless a CT scan proves that there's a need.  As of now, I've got a PET scan scheduled for Tue next week.
The results?  Not really good.  The report says I'm worse.  The tumors are bigger.  I feel my doctor wants me back into chemo ASAP.  I haven't digested or aceepted it quite yet.  I'll wait for the PET scan.  CT will show size but not activity.  I'm grasping at straws?  Maybe...  All I'm taking from this is that the fight is not over yet.  
I think I'll try
Defying gravity
Kiss me goodbye
I am defying gravity
And you wont bring me down!

I'm through accepting limits
''cause someone says they're so
Some things I cannot change
But till I try, I'll never know!
-- Defying Gravity

UPDATE: I've sent the report to FUDA. They said that the liver tumor has improved. But they cannot tell with the lung tumors without seeing the scans. I'll be sending those with the PET scan results (in DVD) next week.