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. 

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).

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!

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.

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.

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.)

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

WICKED

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.

May 6 - looking back

This is my last day in Fuda.  I've been here 25 days.  When I arrived, I honestly did not know what to expect.  I was going to a place I've never been where they primarily speak a language I don't understand.  Then I was submitting myself to a treatment protcol I vaguely grasped.  Yes, there was a lot of faith involved.  Now, I believe that faith was well placed.

 

Overall, I liked their service.  Everyone really tries to make you comfortable especially the doctors and nurses.  They treat you like family.  If you're looking for something other than chemo and radiation, I highly recommend Fuda Hospital. 

 

I'm also grateful for the other patients I've met.  More stories of hope and survival. 

 

Marla - breast cancer - now undergoing local chemotherapy.  Trying different things with a big smile on her face.

 

Mecca - breast cancer - underwent mamectomy.  Now undergoing local chemo.   Such faith and determination on her face when she talks of surviving for her kids.

 

Tess - lung cancer - cryosurgery (plus other modalities) - brought here by her daughter, Rowie, who wants only the best for her mom.  Tess is restless to get back out there and live her life to the fullest.

 

Lolit - ovarian cancer - Despite 2 difficult years of systemic chemo, she still fights on.  She has her husband with her who supports her in every way.

 

Mabeth - tongue cancer - chemotherapy.  4th out of 6 cycles.  So grateful to have found Fuda for she would have otherwise lost her tongue long ago.

 

I pray and wish complete healing for all of them and all the patients.

 

Am I cured?  I don't know.  I have to wait for the PET scan result.  It's scheduled for May 29 in VA.  I'm sending results back to Fuda and the next step will be decided depending on the results of the scan.

 

What I do believe is that my spirit is strong and well.  It's just taking a while to physically manifest.  It will, eventually.

 

May 3 - home stretch

I want to go home.  I really miss my family.  I'm bored out of my mind.  Well, I really did not come here on holiday.  I consider this trip already an awesome success.  But I'm homesick...  I just talked to my daughter over Skype.  That's why.  I was telling her that I was looking forward to the real vacation after my discharge.  I'll be visiting family for about a week or so before going home.  It also will break up the trip so that I don't travel halfway around the world in one go.  I don't think I have the stamina yet.

 

Well, of course, she wants me to go home straight away.  I told her I couldn't move my flights anymore.  Seems like a lame excuse even for me.

 

But I'm so ready to bust out of here!  I'm even tired of the food.  It's the same menu.  It's good but  I've been here about 3 weeks already.   Food outside is super salty.  It's difficult for me to go out since I always have meds.  Tomorrow is my last day of treatment then, I'll just wait for my flight (2 more days).  Then the adventure begins...

 

I met the patient 2 rooms down on the balcony.  She has ovarian cancer and has been on aggresive chemo for 2 years.  We have the same symptoms of neuropathy (numbness of extremeties), difficulty walking and control of hands (fine motor skills).  She's the only other patient I've ever met with these same problems.  Not that I'm happy she has them, it's just nice to have someone you can relate to.  Her symptoms are more pronounced though.  That could also be age-related.  She's older.  We traded ICU war stories. 

May 2 - rattled

May 1 is the Labor Day holiday here in China so May 1 - 3 is a 3-day holiday weekend.  The hospital only has the necessary staff.  Office and admin positions are on holiday.   Nurses are here to give my infusions.  I got to see my doctor today. She ordered less meds for me today but told me that some are still necessary since my breathing is not quite clear yet.  I still hear some pleghm-y noises so I did not argue. 

 

Before you come to Fuda, ask for their scheduled holidays.  You don't want to arrive here on a holiday since I don't think they do procedures on holidays.  They'll take care of patients already in their care by giving scheduled medication, but I don't think they do intakes or treatment plans.  I may be wrong, but it won't hurt for you to ask how their holidays could affect your schedule.

 

This is our 3rd week here in the hospital.  For most of my stay, they've been repairing the road in front of the hospital - which is right below us.  We're on the 7th floor.  We can hear the traffic pass by - which is why we close the window, to keep out the traffic noise.  But we can't keep out the noise of a big jackhammer.  Not the handheld type - the big industrial type that looks like the child of a bulldozer and a crane.  Imagine the rattling noise from about 8am to 7pm.  I had to endure that while I was in the ICU (4th floor) as well.  Thank goodness not when I had to spend the night there.  So, yes, there were days of repite from the noise.  Unfortunately, today is not such a day.  We're shocked because it is a Sunday of a 3-day weekend.  I really feel for the residents.  Mom says they are out on the street.  But I'm ready to tear my hair out.  It's 7:15pm and they have not let up!!!

 

Before I made my decision to come here, some former patients had recommended we stay at the New Building - where we are now.  The facilities are supposed to be newer and nicer.  I haven't really seen the old building but I must say this building is comfortable... except for the noise.  If you are thinking about coming here sometime soon, ask if the road repair is done in front of the new building.  If not, I actually recommend you stay at the old building first unless you don't mind the constant loud rattling noise of a jackhammer day in and day out.  These people are relentless.  Even on a holiday.

 

They just stopped.  I'm hoping it's for the day.  It's dark out now since it's 7:20pm.  The relief ...  Thank goodness!!!

April 30 - feeling much better

My appetite and energy have returned.  I'm getting lots of meds today.  I've got  a total of 11 bags/bottles.  It started at 10am and finished before 5pm.

 

I got more CIC (Immunotherapy) injections on both shoulders.  My shoulders had just recovered from the last dose.  Now they'll be sore again.  I keep moving them so the meds will spread faster rather than just hang out in my muscle feeling like bruises. 

 

I found the schedule for Channel 6 - StarMovies.  In StarMoviesAsia.TV, choose location Philippines. 

 

CNN (Channel 4)  is back.  Channel 3 is now Discovery Travel & Living (Travel Channel and FLN).

 

Segs (Service Administrator) came by to visit.  He was the one who noticed that my energy was back.  He said I was smiling again.  Yesterday, I was just lethargic.

April 29 - last procedure - details

April 28 (Wed) - The nurses started to prep me for the procedure around 5pm.  The last meal I had was the light breakfast the doctor had me take at 10am which was a boiled egg, milk and jello.   They took me down to the CT guided OR around 5.30pm.

 

While waiting, I met a Filipina mother who was accompanying her 10 year old son (who was still in the OR undergoing iodine seed implant).  It was their second time in Fuda.  They expected only local chemo, but due to the PET scan results, the doctors recommended iodine seed implant.  She had a hard time preparing her son.  She wished that the doctors warned them that the treatment plan may change depending on the scan results.

 

Then it was my turn.  They had me lie on the CT bed.  Then I had to sign the consent form.  Then more prepping going on around me and the I was out.  When I opened my eyes, I thought no time had passed.  I asked the doctor, "Finished?".

Doctor:  "Finish."

Me:  "How many cryo probes did you use?"

Doctor:  "4."

 

The wheeled me into the ICU at 6.30pm.  I had a feeling I'd be there overnight since my doctor probably went home and will only be able to order my return when she arrives in the morning.  Just like all my other procedures, no one bothered to tell mom that I was done in the OR and was in the ICU.  She did not even know that I would not be returning that night.  I remember my first two procedures, I asked the nurses in the ICU to tell my mom I was done.  They said, "Yes."

 

I was really cold.  Probably the general anesthesia.  The nurses put me under 2 winter blankets.  I also was not feeling like eating.  Around 1am, they asked me if I was hungry.  I did not think I could eat so I said no.  I threw up once around 2am.

 

This time, I knew I would not be able to get away from using the bedpan since they were pumping lots of liquids via IV.

 

The doctor came around 9am.  She said I only need to have x-rays done then I'll be brought to my room.  I opted to wait to go to the bathroom in my room.

 

We went to the x-ray.  The nurse noticed my discomfort.  I told her I had to pee.  After my x-ray, she brought me back to ICU.  I went to the bathroom.  Lo and behold!  It's a squat toilet!  It's a friggin' hole in the ground.  I was still a little weak but I concentrated on squatting and getting it done.  I was wobbly getting up.  The nurse was saying Careful! and Slowly!  Really?  There's no slowly coming from a full squat with your knees shaking.  No wonder ICU patients are not allowed to go to the toilet. 

 

She then brought me back to the room.  Mom was outside since they were still disinfecting the room.  They wrapped things up as soon as I got there.  It was nice to be back.

 

I could not eat all day.  I had jello.  Some congee (rice porridge) for lunch.  I was nauseous all day.  The weather was bad so there was no CNN or NatGeo.  O well...

April 28 - Cryosurgery (lung - anterior lobe)

Last night, the nurses reminded me that my cryosurgery is scheduled today.  I had been fasting since midnight.

 

This morning, my doctor came to see me to see how I was doing.  Then she checked for my schedule.  I was 7th on the list.  Probably in the afternoon, she said.  She let me have a boiled egg and some water.  So now I'm just waiting.

 

I'm not really worried.  The last 2 times I went through cryo, it wasn't so bad.  I expect a 24-hour recovery period.

 

I still have my neuropathy, though.  My fingers and toes are still numb and feel like pins and needles.  Control is getting better, though.  Yesterday, after accupuncture, the accupuncturist gave me a massage on my legs.  I complained that they were very stiff and numb.  The massage hurt a little while he was doing it but feels so much better now.  It might take a while for the chemo to clear from my body.

 

Another lung cancer patient shared to me that he's been doing coffee enemas for months.  This has worked to control his disease without chemo or radiation.  The coffee enema clears out the liver where all toxins go.  Interesting concept.  I might try it when I get back.

April 27 - noon - Naudlot - No mall :-(

When the doctor told me yesterday that I had no medications to take today, we made plans with our friends to go to the mall for lunch (dimsum).  I was soooooooo looking forward to it! 

 

As I stepped out of my room, my nurse said, "No!  You have CIC (Immunotherapy) infusion.  That will take an hour."  I was so pissed because I was in my room all morning.

 

So, since our friend's daughter was already at the mall (we were to meet at noon), I had Mom go with our friend.

 

Lesson:  If you want to go out, make sure your doctor and your nurse say it really is OK and you have no scheduled meds.

 

By the way, aside from the IV (cultured blood they took from me), they injected me in the rear.  (Oo, sa pwet.)

April 26 - can't wait for my break

No problem!  (My doctor always says this.)

My doctor told me that I will get a break from my meds (by IV) Tue and Wed.  So we've made plans with some friends to go to the mall tomorrow to have lunch at this dumpling place.  Maybe some shopping after.  Can't wait!

 

The meds I usually get are for lungs (clearing phlegm), liver function (2 bags), antibiotics (1 bottle of yellow liquid that looks like pee) and stomach (to protect it; antacid?).

 

Immunotherapy

I had my immunotherapy shots today (3rd dose).  I got one on each shoulder and another in the knee area.  The shots in the shoulders hurt after the injection itself.  It feels like a bump with a bruise under it.  So I usually move my shoulders to get the blood moving in that area.  The accupuncturist does the knee shot.  I don't know if it's because he's an accupuncturist and he's injecting in an accupuncture point, but I don't feel that particular shot.  Maybe just he's just that good.

April 25 - Church

We planned to go to church today so I asked my nurses to hurry the meds so I can be ready to leave by 2pm.  The meds finished a little after 1pm so I was able to get ready in time.

 

We were to meet our nurses who were going to church with a group of other patients.  But outside the hall, even before 2pm, other patients were already gathering and planning to go to church as well.  They were holding hand-outs from the hospital that had the names and addresses (in English and Chinese) of points of interest around the hospital so patients can point to the place they want to go to a taxi driver.  (We didn't get one of these.  That is supposed to come with the welcome fruit basket.  I asked for one and they said they'll send me a copy as soon as they make more.)

 

I saw my friend from yesterday and we joined the group.  We opted to take the bus with the nurses and their group.  There were at least 10 of us.  Bus fare was 2 RMB per person.  We rode the 190 bus from the station near the hospital.  It was at least a 30 minute bus ride.

 

During the ride, an elderly lady got on and stood next to my seat.  I tried to get up and offer her my seat.  She shoved (surprisingly forceful at her age) me back into my seat and started chatting in Chinese.  I smiled at her and said 'I don't speak Chinese.'  But still she carried on.  She could have been telling me about her family or shopping list, I could only guess. 

 

They said there was just a 10 minute walk from the bus stop.  That was a long walk.  It's a 10 minute walk through the most congested city ever.  The dust and smog!  That cannot be healthy for anyone.  If you've ever walked EDSA-Kamuning (Manila) or Chinatown in LA during rush hour, that's how bad it was.  Considering that was Sunday afternoon, I don't want to see that area when they consider it rush hour. 

 

I hear that if you are late to church, the doors close.  We were late.  Good thing the doors remained open.  There was a LOT of people.  The 3.30pm mass is the only English mass.  Everyone who doesn't speak Chinese goes then.  The place was filled to overflowing.  Even the entrances were crowded.  Since I was tired from my walk, I stood at the entrance only for part of the service and sat outside for most of it.

 

The church itself (Sacred Heart of Jesus) is a big, gorgeous, Gothic church.  What surprised me the most was that there were a lot of Africans in attendance.  What brings Africans to China?  Singing hymns made me think I was in a Baptist church.  It was awesome for they sang whole-heartedly. 

 

On the way back, 4 of us agreed to split taxi fare so we don't have to do the long walk through the dust and smog.  Getting a taxi was another adventure in itself.  This is where the language barrier is really apparent.  The streets were super busy.  There were no taxi stops.  There were no stopping taxis either.  Maybe it was because the mass had just finished and church goers were all snapping up the taxis.

 

We noticed super compact mini-vans on the side of the road.  These are taxis that do not have meters.  You bargain the fare up front.  The first guy we bargained with looked too shifty so we tried a different corner.  Another compact mini-van with a driver and a lady assistant stopped.  She knew enough English to strike the deal (60 RMB).  So we all crammed in.  There was no 3rd row so we really were crammed.

 

The drive was another adventure.  Talk about close calls not just with other vehicles but with motorcycles, bicycles and pedestrians!  The road was a 4 lane freeway, too! 

 

Needless to say, I'm not ever doing that (Church) again.  The distance, pollution and aggravation is just not worth it.  Channel 2 (The Filipino Channel) airs a Catholic mass every Sunday at 6am.

April 25 - 10 am - Movies and books

Movies

Channel 6 - StarMoviesAsia.TV

They constantly show this URL on the top left of the screen.  The schedule on the site does not coincide with whatever is on.  No where to get the schedule. 

 

I just finished watching X-Men (the first movie).  I just love how Cyclops and Wolverine get on each other's case.  Hilarious!  (It's stupid funny, but it is funny.)

Wolverine:  Don't shoot.  It's me.

Cyclops:  Prove it.

Wolverine:  You're a dick.

Cyclops: OK.

 

Books

I have also been able to read Percy Jackson and the Olympians books 1 and 2.  Let's just say it's no Harry Potter (I'm a very big fan of the books).  Although I must admit i can't put the books down.  I want to know what happens next and I'll probably read the whole series.

 

What don't I like about it then?  It's the way it was written.  It's really targeted for the American youth.  It's very contemporary American.  Harry Potter was written for the British youth.  I just find it more exotic since I'm not around the English often.

 

But I do love the plot and the pace of the book.  Like I said, I can't put it down.  The author successfully melded ancient Greek mythology and the modern American culture. 

April 24 - 8pm - My first jaunt outside

3rd Floor Cafe

Mom heard of the 3rd floor cafe yesterday and wanted a cup of coffee.  I was itching to go out so I accompanied her. 

 

Mom had fresh orange juice and I had rose milk tea.  She was asking the waiter if the orange juice was fresh and the guy said yes - fresh!  When mom sat at our table, I told her that I wasn't sure if the guy understands the word fresh.  He knew rudimentary English.  All menu items had pictures so it was easy to point and order.  I thought 'fresh' may not be part of his vocabulary.

 

So I was pleasantly surprised when we heard the whir of some juicing machine and the smell of fresh oranges.  All their juices are made fresh!  Although watch the prices.  Mom's orange juice cost 18rmb (US$3).  Same price point as Starbucks.  We heard a bad review on the food so we skipped on their food items.

 

The Outside World

I really wanted to walk outside so Mom gave me a tour of her favorite stores and introduced me to English speaking store owners.  It was a nice day out.  It must have been in the mid-70's (Fahrenheit).  It was a typical Saturday afternoon.  Kids running around.  Families out and about doing laundry or just hanging out.  We were out about half an hour.  It was nice to touch the ground with at least my toes.  Saying Hi! to Mother Earth from the opposite side of the planet!  (Awesome!!!!)  Soaking in energy from this side of the world.

 

On our way back in, as we were getting into the elevator, a lady asked if we were Filipino.  She just got here and wanted to ask someone about their experience and how things work. She was meeting her mom here.  She travelled from the US (TX) and her mom was coming from Manila.  Her mom will arrive 10pm tonight.  She was downstairs to get a meal card. 

 

Another Fuda fact for newcomers:

The hospital does not take cash for food.  You need a meal card to eat either at the cafe or the delivered food service.  One thing they never tell you up front is that they require a 15rmb deposit for the card.  So the first time you give money (let's say 100rmb), they only load the card 85rmb.  You get your deposit back when you check out and return the card.  The next time you reload the card, they put in the full value.  The cashier doesn't explain this very well.

 

Back to our new friend... That was an awesome thing she did.  She looked for someone to talk to.  Her only requirements were that we spoke English (most Filipinos do) and that we had the time and inclination to do so.  The first patient (family) she tried was checking out and hurrying so she didn't really get a chance to talk to them.  We hung out with her at the cafe for a couple of hours giving her tips and tricks for newcomers.  When looking for "mentors", find someone who is settled in.  Between treatments, there really isn't much to do.  I find most patients (and companions) very open and friendly.  You'll find them in the lobby, at the hall near the nurse station, or at the shared kitchen when they cook.

 

By the way, since our new friend had not had lunch yet, she ate at the cafe.  Not too yummy.  Neither was their fresh apple-carrot juice (they had run out of orange).

April 24 - 3pm - untethered

I was being infused (via IV) with medicines from 9am to 2pm.  It's pretty much got me tethered to the bed.  My IV pole is stuck to the bed so I keep my movements within a certain radius.  I only go to the bathroom if I have to.  Don't want to unhook and re-hook my bottles unless necessary.  This really bugs me.

 

But it's 3pm now and currently, I'm untethered.  What am I doing?  Sitting on my bed blogging.  Shouldn't I be up and about?  What really bothers me is that I don't have a choice when I'm tethered.  Now, I choose to sit on my bed because I feel like blogging.  I can get up whenever I feel like it.

 

Alright, I'm getting up.

April 23 - 6pm - youth advantage

Today was a good day.  I felt good enough to get up and walk.  (I've been doing that since yesterday.)  Despite the cancer, my body is strong and it heals fast and heals well even from trauma like cryosurgey.  Given, it's minimally invasive.  But I'm so thankful to see that parts of my immune system still works.   My youth is a definite advantage.  The nurses are surprised that I'm up and about in less than 24 hours.

 

I truly believe I can beat this.  Now, even more so.

 

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Mom got some rambutan (spiky Malaysian fruit).  YUM!!!  Haven't had that in years!

 

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Here's a list of what you should bring if you ever come to Fuda:

1) toilet paper (6 roll pack - you can buy more at the supermarket if you run out)

2) paper towels

3) towels

4) everyday wear for the patient - pajamas (nice ones so you can move around the hall in them)

5) toiletries

6) utensils + plates + bowls (depends on what you like to eat in; microwavable)

7) tabo - if you don't know what this is, you don't need it

 

If you are a first timer, you are given:

1) a fruit basket

2) 2 rolls of toilet paper (you don't get any replacements)

3) 2 pairs of rubber slippers (useful)

4) 2 hand towels

5) bucket

6) 2 glass cups

 

Other interesting tidbits:

1) each room has a water dispenser.  1st 5-gallon bottle is free.  10rmb per refill

2) they won't give you accupuncture/traditional chinese medicine unless you request it

3) I was advised to bring a rice cooker.  Mom and I opted to order from their food service since we don't eat much.  You'll save so much more if you eat out or cook your own food.