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. 

4 comments:

Mayet said...

beautifully written Xenia. I am praying for you.

Dean said...

Hi X -

As it happens, my wife and I live in Philadelphia. On the other side of the city from the CTC (in the Mt. Airy section of town, to the NW), but not too far. Anyway, if you need *anything* (eg if you or your family need a place to stay), don't hesitate to ask. It sounds like you have relatives in Jersey so that may be just as convenient, but just thought I'd offer.

Dean

Anonymous said...

i pray for you every night. You dont know me but you know my sister Pat. I pray for a miracle for you. Much love and hugs. Jeannie Thomas Triplett

Anonymous said...

you dont know me but you know my sister Pat. I just want to let you know you are in my prayers and thoughts. I am so happy that they take care of the caregivers also. I was
caregiver for my husband plus worked a full time job so we wouldnt lose health insurance. He didnt have cancer but Hep C and had to have a liver transplant in Cincinnati. His Hep C ravaged the new liver .

Please know that prayers are continuing to be sent your way. God Bless you and your family.

Jeannie Thomas Triplett
p.s. i used anonymous cause i couldnt figure out how to do the others lol :) have a beautiful day !!! XOXOX